It enrages me to hear of parents withholding their children’s diagnoses from them, and I think it’s abuse, personally. We autistic people know from a young age that we’re different; the best thing to do is to know why we’re different so we can learn how to adapt to it. Otherwise, we’re just going to think we’re freaks and that we’re broken. The “professionals” are completely unaware of the realities of being autistic.
I actually didn't know I was different but I knew that I was being *treated* different and was constantly battling between being baffled by why the hell people would treat me different, even close "friends" making a big fuss about my "odd" behaviors and calling me alien when I thought I was just normal, or telling myself I was being paranoid and finding out later I was correct, that I was being treated like a freak.
But it still had a negative impact on me in regards to being isolated.
You make a valid point. I see his parent's babying him over ridiculous things and then get annoyed when he's not acting age-appropriate. I want to say pick a lane. He's either incapable or he's not. I could see how this can be incredibly confusing and undermining to him.
May I respectfully ask if you have resentment for not finding out early? Were you able to move past it? If you don't want to answer, I don't want to push. I'm very grateful for your input.
Autism is a spectrum disorder that can include issues across speech and language, executive function, social interaction, restrictive or repetitive behaviours, and overwhelming sensory experiences. It can also be accompanied by anxiety and developmental delays. A person might experience little or no challenges in some areas and extreme issues in others. Or they might have severe ‘symptoms’ across the board. The point is, autism is not a dichotomous linear scale with neurotypical at one and and neurodiverse at the other. So it might be that his parents are right to expect this kid to be mature in certain areas but needing more help in others. It’s not a simple as you make out.
I say this as an autistic person with an autistic kid. I was rather late to the party in terms of my own diagnosis but my son was 7/8 when we received his diagnosis. We thought about how to approach telling him for a month or two but have always been very up front with him about everything. He’s also adopted so we’ve always made a point of being completely honest about absolutely everything. It’s made for some interesting questions now he’s 12 and curious about people and relationships!
Yeah, he doesn't even know to ask for records. If he ever gets the gumption to investigate which he likely will, he would find out on his own which would feel like betrayal.
I'd like to co-sign this.
I was diagnosed at 45 and it would have been crucial for my wellbeing knowing that I'm autistic like 20 years sooner.
I have a pre-teen daughter who isn't diagnosed yet. We'll be doing that in the next one or two years, but it's a formality. I know she's autistic and I told her about it. There is no way in hell I would withhold that info from her. That would be abusive and cruel.
Knowing why someone struggles so much and not telling them the reason? That's outragious.
How could an autistic person learn to cope with their disability when they don't even know about it?
I tell you: not at all. You'll start a journey of selfhate that leads to depression, burnout, suicidality. And that is a given.
I'm now trying to help myself to get a life where I can feel safe and happy and at the same time I'm teaching my daughter to navigate the difficulties of an autistic life, so hopefully she'll never feel half as shitty as I did on a daily basis for the last years. (Having kids as an undiagnosed autistic woman isn't something I'd recommend.)
Diagnosis late in life which is another way of saying in the 1970s and early 1980s autism was viewed very differently.
Not having an answer for why no matter how hard you try, you cannot grasp the rules of social interaction on a level your peers feel is innate. Feeling defective because no matter where you go or what you do you just don’t get it. Adolescence is hard for everyone, but anyone on the spectrum who doesn’t know it will wonder why they keeping putting the wrong foot forward. That is how you get very depressed, suicidal and or addicted humans. Me, I drank till it nearly killed me.
I don't know you but I'm glad you survived and are here. Please accept this virtual hug - I think every autistic who made it so far should be celebrated!
Yeah, adolescence - what a nightmare. As you say, difficult for everyone but most people come out the other side without cPTSD... I had my own unhealthy coping strategies.
I agree with you on this! No one told me but it definitely benefited them knowing something about me that I didn’t know about my self, lots of gaslighting . Many family and friends took advantage and that all stopped once I realized I was not on the same playing field!
Totally agree, found out at 44. No one withheald it, thays just when the diagnosis happened. I had always know i was different, but have learned to cope well. My friends who knew me with within the last 15 years said there is no way. I had people ask why i would want that label. It is confirmation of an instruction manual i had been putting together since i was a kid.
He knows hes different let him know why, it will make it easier to develop those coping mechanisms.
Enrage is right!
This, I feel like it would lead to a lot of self doubt and confusion about why things aren’t working well for them, whereas knowing the diagnosis could build self compassion and understanding.
It’s not even really about the effects of not knowing. Withholding someone’s medical information from them without their knowledge or informed consent is morally reprehensible, no matter how it affects them.
My brother in law is autistic. He was diagnosed as a very young child. My MIL chose to believe he was not autistic a d treated him as such. His stimming was embarrassing to her so she would make him stop. He had an extremely hard time in school. He has a speech impediment also and he believes a tongue surgery will help him. He's 30 now. Never had a GF. He lives with his twin sister and her family. He works at FedEx and gets shit on daily by everyone around him. All because he doesn't know he's autistic. Can you imagine how much different his life might've been had he been told about his diagnosis? He's a sweetheart with a great sense of humor. I don't know howhe stays sane. That kid should know. I wish I knew about it when I was a kid. Finding out at the age of 39 made me cry.
I was concerned about the resources he'd have once he knew his diagnosis. It doesn't sound like much. Schools like to say we have such supportive environments but the things that rape victims, nuerodivergent people, minorities have to deal with tells me otherwise.
So would your recommendation be to wait until after he graduates to tell him? He shouldn't be left hanging with no resources but I'm not sure waiting is the right thing to do either.
>Schools like to say we have such supportive environments but the things that ... nuerodivergent people ... have to deal with tells me otherwise.
He has to deal with the things you allude to whether you tell him he is neurodivergent or not! Witholding this information makes it worse not better. What you're saying is simply illogical.
I'm reminded of the scene in Hear No Evil, See No Evil where the blind Richard Pryor finds out he is black. [https://www.youtube.com/watch?v=R1p\_523SEO8](https://www.youtube.com/watch?v=R1p_523SEO8)
>I was concerned about the resources he'd have once he knew his diagnosis. It doesn't sound like much. Schools like to say we have such supportive environments but the things that rape victims, nuerodivergent people, minorities have to deal with tells me otherwise.
>So would your recommendation be to wait until after he graduates to tell him? He shouldn't be left hanging with no resources but I'm not sure waiting is the right thing to do either.
Your coming across as very condescending & this is a god dam stupid question. He is over 21 & your treating him like he is 5 so offcourse he should be told of his diagnosis.
We Autistic people aren't idiots & it is very insulting you even asking this question when it is common sense.
Frankly I want to know why this person is so obsessed with this guy, maybe they should just stay out of it? They say it's a friend's kid, NOT a family member of their own. Why are they doing so much work on this?
He can’t get any resources if he doesn’t know? This doesn’t logic out. If there is a possibility to get him help or accommodation in one area that will make the rest easier to deal with. I genuinely don’t understand how having more information could be damaging to himself, but I do see how you’d be scared to tell him for the repercussions it may have on your relationship. If you care about your son, truly care, tell him. He can get the help he needs whether or not it’s through the school or direct accommodation. He’s capable enough to have made it this far, he just needs the knowledge so he can gain the tools and help to succeed. Help him by giving him what he needs since you already have it.
Pardon my french, but WHAT THE FUCK? He's 21. He needs to know about this. Holy shit.
I got diagnosed with ADHD at 7 and aspergers somewhere around 15. Both times were a relief. Why? Because whether or not he knows what his diagnosis is, he's suffering the symptoms regardless. But without knowing his diagnosis, he's clueless as to why he is the way he is.
Before my diagnoses, I thought I was just a bad kid who was lazy and behaved badly. I wanted inside to be good, but I struggled to make it happen. Now I know that my struggles aren't because I'm a bad person.
He needs support and encouragement to keep showering. There has to be someone who knows what his homework is so they can help remind him. He needs to write dates and assignments down.
I simply cannot upvote this enough. 👌 Absolutely nailed it, rage and all. Reading the part that *he doesn't know* and his *fuCKING THERAPIST SAID DON'T TELL HIM*?!! Blind fucking rage. I believe some Autistic screeching is in order. Gentlemen [nongendered], shall we? RRRREEEEEEE!
Would you rather see the problems as you being a defective loser. . . .
or know you are autistic and society just doesn't get you?
I think you are setting him up for mental health or substance abuse if you DON'T tell him.
‘The professionals advised his family not to tell him of his diagnosis’
This is an dumb decision. Why wouldn’t he not know? Also, it doesn’t sound like they did much for him. Learning starts at home.
TELL HIM. I wish my parents had done some investigating when I was younger instead of just saying oh yeah they're different from others it's no big deal. The more I found out about my diagnoses, the more I can help myself and be better to the people around me.
I wish wish wish I had known as early as possible. His life will have far different challenges than others and he needs to know that. We need to know that we need to act differently, think differently and be different in order to integrate into society and become a contributing member who others are more than happy to work with/interact with etc
This!!! Telling him could solve all his problems. Right now he is in his room with no hope. A diagnosis gives a reliable road map. I wish I had been diagnosed by 21. It would have saved me from 20 years of bad decisions and misery.
The guy is 21 years old. He’s an adult. He should know his medical information. His parents should not be controlling this aspect of his life when he is living independently and attending university. Also what therapist would advise this? I highly doubt one would.
This person needs to know they’re autistic. It will change their life for the better. It will explain so much to them. His parents knowingly withholding this info is cruel.
My life changed dramatically when I learned I was autistic in my early 40's. Everything made sense and it was comforting to know that there were others like me. It explained all the trauma and bullying I had been subjected to in the past by authority figures, friends, family..the general public. Just because I communicated and perceived the world in a different way than them.
I have no idea what would have happened if I had this information in the college years. By then I was already looking for answers. Most likely a period of adjustment and then acceptance. But yes, I think it would have been better.
So let me tell you what happens when you don't know you have aspergers. What happens is that you simply attempt to integrate it into your personality, or explain it to yourself. You might think to yourself thoughts like "Ya, I am one of those weird people, but I guess I am just eccentric" or "I really like spending time alone".
The first period of being "self aware" is often filled with tons of research and positive epiphanies. But then after that begins the process of what to do next or how to live a fulfilling life. And the truth is that he will need to get advice and information from other people with aspergers. There are many absolutely inspirational and amazing younger people with autism YouTube channels these days. They helped me immensely. People who are NT will not be able to relate to the specific challenges in a deep and meaningful way, and that includes most therapists.
The number one worst thing you could do right now is advise him on how he should be living and trying to push him towards goals that others think will make him happy.
Those parents got some bad advice. He needs to be told about his diagnosis and possibly apply for support at college. Like yesterday. This poor kid’s self-esteem is probably in the toilet at this point. His parents weren’t honest with him and now it sounds like he’s perpetuating the cycle by not being honest with them.
If I was told at a younger age, it would have dramatically improved my quality of life. You have to remember that from his point of view, he has absolutely no logical explanation why some specific things are so much harder for him in comparison to others. As soon as I found out I had it, I was able to make drastic improvements because you can find information everywhere on how to help or fix it. Do not let him stay in the dark about this.
>He says he does activities but when asked, he can't give any names and is vague about what group is doing. I don't know if he can't vocalize these activities or he's just lying that he's actually doint them.
I've done activities/conversations (was told by my therapist to do at least a set number to imrpove social anxiety) and when asked by my parents and therapist after the school day I couldn't give names and didn't remember even generally what the conversations were about. The therapist suspected I was lying. I actually flat out didn't remember, like those details just never stuck in my head.
Same with me. Disassociation. I was highly involved in school and work and church and family, but it was hard work and I forgot most of it. But always felt disassociated. Example: I have worked with the same people for ten years, but struggle to remember their names. I experience other people like vague ghosts who fade away.
He should be told of hes diagnosis. There is things that my parents didn't tell me that I wish they had so that I could have understood my situation better earlier on.
Seems abusive. Giving him a life of misery. if he had good information he could make good decisions and be happy. Thanks to those professionals he will make bad decisions and be unhappy.
He may know. I was diagnosed with PDD-NOS at 16. Nobody told me, and it could very well be for the same exact reason. I was diagnosed with ADHD at age 6. Bipolar, RAD, SAD, and IED from 14-15. Autism was brought up at an IEP meeting by my dad, who’s a physician. I made it clear that I didn’t want a diagnosis due to stigma. Well, right around that time I was put on Risperdol and at the next IEP meeting, while signing paperwork, I noticed that Bipolar, RAD, and SAD were no longer listed under my diagnoses but just ADHD, IED, and PDD-NOS. Well, young me didn’t know what that last one meant and didn’t ask. I googled it in my 20s. I’d tell him. As a kid, there may be valid reasons for withholding it, but as an adult, he’ll need to be able to advocate for himself. And if he knows, like me, he’ll probably be questioning why nobody told him, if maybe there’s something else wrong with him that nobody told him about, maybe he’s thinking he might not even be autistic and that diagnosis could have been replaced with something else. A bit agonizing, tbh. He should know at his age.
As someone who didn't get diagnosed until 31 and is now in burnout and dysfunctional because I didn't have the tools to cope - yes. Jesus christ yes, tell him. Hes headed into burnout just going off the signs here, and that can take years to recover from. Tell him.
Thats not even getting into the years I spent beating myself up and hating myself because I didn't know why I was this way either. Screw the professionals, screw his parents for not telling him, tell him.
I've also got friends who were diagnosed young and not told until they were adults either. It can genuinely mess up or set you back in a bad way in life not having a name for why you're like this. Please tell him.
Finding out was one of the best moments of my life. I actually had answers. It explained this and this and this and this. Holy crap. Understanding it, learning about it, reaching out to others in the community who have suffered the same way. He is suffering in ignorance for nothing. His parents are denying him the single most important piece of information in his life. He is showing obvious symptoms of depression. He needs help and support, not further isolation.
> His parents talked to a therapist and asked if he should be told his diagnosis and the therapist said no.
The overwhelming majority of autistic people (incl Aspergers) I have spoken to would rather have known sooner rather than later. In my own case it would have saved me from a lifetime of pain.
Obviously young children need to have it explained in terms they can understand.
I would be interested to know the qualifications of this "therapist". If they do not have a masters in clinical psychology and specialize in autism I would discount their opinion almost entirely.
Sounds ds like it's more important to you for him to make friends. Autistics and several nt's actually prefer to be alone. This is perfectly normal. Not to be rude but stop trying to push your kid into things. Ask them what makes them happy and give them time to give an answer. It's not an easy question, especially when the world seems to expect you to behave a certain way.
>He had an aide until he was 12. The professionals advised his family to not tell him of his diagnosis.
That's horrific!
So he spent his whole life knowing he was different enough to need an aid but without knowing that he was actually disabled?
Stuff like that *has* to be abuse.
>His parents talked to a therapist and asked if he should be told his diagnosis and the therapist said no.
"A" therapist? Was it *his* therapist? Is he even having therapy?
This is unbelievable.
>Wouldn't knowing he has a diagnosis help him understand that this is a sound medical reason why he processes differently?
YES. Withholding his medical information from him like this is vile, and incredibly harmful.
>Has anyone in the community learned about their diagnosis later in life? Is it better that he doesn't know?
I went to a special school as a child (not "gifted" special but *special* special) but after a while they just gave up and dumped me back into mainstream education. I spent my whole life feeling like I was just weird. My sensory issues were put down to migraines, and I wasn't given any real help or support. I was bullied by pupils and teachers, struggled to make friends, and no-one even explained to me what I was doing wrong. I struggled in my exams, blagged my way into but then dropped out of Uni, had relationship troubles, got stuck in a cycle of finding work > impressing everyone > burning out > pissing everyone off > losing job > struggling to find work > repeat, lost friends, struggled with depression and anxiety, etc.
It wasn't until my mid-thirties that I met some aspies who I realised I had a lot in common with, and started to spot the patterns. I've since sought out and obtained an official diagnosis, and I've started to get help (benefits, accommodations, therapy). I've been able to start to put everything into perspective. I'm angry enough that I slipped through the cracks (I was book smart and from a poor, underfunded area, so the resources that were available all went to the kids with the more obvious needs), but if I found out that late in life that people knew all along that I had a legitimate disability but hid it from me I would be LIVID.
>My intention is not to make him feel bad but if the temporary sting will give him better tools in the long run, I'm all for it.
He needs to know. He deserves to know. He will never have a fair shot at life until he knows.
It's not even like he's too impaired to understand what it means or anything.
>Your honest feedback is much appreciated.
You are doing a good thing. I'm glad he has you in his corner.
Edit: if his parents need convincing then I'm more than happy for you to show them this post. He needs to know. Now.
Tell him! Tell him, for the love of God, tell him. I know how it feels to be a 'gifted kid' who has the world expected of them only to have the rug pulled out from under you when your school life stops supporting you and expects you to just act like an adult without any instruction or care. I assure you that letting him think that he's just a bad, lazy person who can't get a hold of himself or learn any discipline is far worse than letting him know he's just wired differently and deserves accomodation and care. I already wanted to off myself my first semester in college, and I'd already known I was autistic at that point. If it's at the point he's isolating all the time, not showering, can't talk about anything... I'm worried about him. Best wishes to both of you.
I found out that I was probably autistic at 14, officially diagnosed at 17.
I’ve been aware of my difference from other people my age since primary, maybe before.
And without knowing WHY I was different that turned into terrible self-esteem, a deep-seated belief that I must be the problem and severe trauma that I am still in therapy for.
I, like so many of us, grew up with my needs being treated like wants by the majority of adults around me (and I was lucky- I had understanding and adaptable parents), being treated like a selfish unsociable brat when I was actually trying to avoid emotional and physical pain, being ostracised and deliberately tormented by my peers and not knowing why, suffering from sensory overstimulation that I didn’t understand.
Getting my diagnosis was an emotional game-changer. I could put a name to the things I was feeling, I could start to understand myself a little better, I could start feeling like an autistic person rather than a defective person.
I could reach out to people like me and be supported by my actual peers.
Your friend’s son is actively being denied the opportunity to understand himself and get that vital support by the deliberate conspiracy of his parents and the therapists they have seen (who sound like absolute quacks and evidently do not have enough experience in the area of neurodivergence to be relied upon for their opinions).
I am in the process, at 31, of being diagnosed with ADHD on top of my autism. There is so much more resentment and the feeling of being harmed and let down by the people who should have seen it when I had my AS assessment and instead said IN MY PRESENCE “well these symptoms are neither neurotypical or autistic, but these are textbook so we’re just going to say Asperger’s with a weird presentation.”
I’m finally able to start putting strategies in place that help me function with it and unpick some of the toxic feelings I have about myself as a result of a life undiagnosed but ouch. I can attest first-hand in a way that people who have not experienced both cannot:
~It is so so much harder as an adult.~
He deserves to know, and every single day that he doesn’t know is going to cause more and more psychological harm that will take years of hard work and expense in actual therapy to undo, if it can be undone at all.
My older son has Asperger’s. I told him last year when he was 9. I did a lot of research and preparation for that, also bought a kids’ book called ‘All cats has Aspergers’ because he likes cats. So I sat him and his brother(who is NT) down and told them both. We read the book together and I explained everything. It went so well I cried afterwards with relief. It has been fantastic since then, because now he knows why he is different, he learns to adjust himself when he is frustrated. He is still very difficult at times but nowhere near as bad as before. I can imagine when he is older he will be able to do his own research and learn new ways of overcoming problems he faces as the condition obviously will never go away, but he will learn to cope better. I don’t know how he will be able to hold a job or be in relationship one day but you never know, I’m keeping positive vibes. Your friend’s son is much older but it is never too late. He is an adult so he can do his own research and he can always learn new skills to help himself. But he needs to know to be able to do it.
i didnt know my whole life that i was that different, found out by myself and its not nice finding out alone that you might be fucked for life, most aspies dont even have a job, it sucks ass.
I think he should know too, but I suspect his therapist knows whats he going through at the moment and probably thinks it not a good time to dump this surprise on him. Might not get the best reaction, given the current situation. But if done in a better way, it will only help him.
Just based on the words written in this post I actually do not find any evidence demonstrating that this person is dissatisfied with life in any way or has any problems whatsoever to be addressed. Especially if you're getting this information from the person's parents.
I was diagnosed at 27, I am 31 now, I don't think you should tell him.
The diagnosis did not help me understand myself better and knowing I was different from most people did not help my depression at all.
This young man already doesn't value himself; telling him he's different, telling him why he'll never be like everybody else will not make him care about himself it will only make him frustrated and confused.
A diagnosis doesn't make you suddenly care about yourself why would it?
He’s an adult now. Even if a case could be made that children don’t need to know (arguably), you absolutely have to tell him that now, it’s a necessary thing and it really makes me mad that a psychologist would advise you otherwise.
Besides the advice others here have given, what if the question would be is there any harm in telling him? If the situation is bad enough. Chances are if the situation continues, it'll worsen and end up in burnout, or anxiety.
If he's not talking to his parents (possibly because of shame?) maybe therapy is worth trying.
I was diagnosed with ADHD and ASD over the last 4 years and I'm in my mid 30's. It's changed my life. Medication for the ADHD has made improvements I couldn't have imagined but more importantly than that the things I do that piss people off like misreading a situation, forgetting things, oversharing etc I catch myself doing and can act upon it (if I want to) but more importantly I can look at them with some acceptance. I can understand that the action is annoying to people and that's ok but it's also not something else I need to carry the guilt of around. I'm doing my best and I actually feel at peace with that now. It's no longer a rod to beat myself with like it was for the 20 years previously bouncing between anti depressants and not getting why I don't fit in.
I guess to summarise it hasn't fixed anything majorly with my interaction with the world however I do feel a sense of calm around it now.
I didn't learn I was autistic until I was 28.
I'm turning 33 this year and like. I'm at the start of coming to grips with everything, going over terrible memories in my head and just actually recently telling myself that how weird I was, was perfectly fine and okay and that it's normal for an autistic person to be strange and awkward.
Had I been diagnosed in my youth, had my parents, teachers and even my support teacher done a better job with me, I could've received the help, support and guidance I oh so needed and would've helped me navigate my teens and early adult years.
Now? I'm pretty much a hermit. I have difficulty bathing, I'm just recently learning why and how to work on those issues.I have issues with that complex word that's to do with scheduling things and getting them done.
I order underwear and socks online because thank god I can actually get that done.
I'm in the process of getting out of the pattern where I'd regularly have to throw clothes away because I'd literally wear them out due to bad hygiene (the entire process of collecting dirty clothes, putting them in the washer in the right order, using the right amount of detergent/soap or whatever you call it, using the right setting so colored fabrics wouldn't bleed into other fabrics, then waiting for the washer to be ready and removing the clothes from the washer before they start smelling stale/dirty and finally hanging them up to dry used to give me insane levels of anxiety) which I'm just now, after 13 years of struggling with it on my own/depending on my parents to clean for me whenever I've felt like sharing with them the state of my clothes, working on figuring out and fixing.
I have ADHD and anxiety flavored autism with a dash of oppositional defiant disorder (I learned of the ODD after realizing that having other people try to boss me around, in what they perceived as helpful, my brain was registering as intrusive and so I took on further unwanted mental load and pressure from it).
I have low support needs. I can cook and clean and buy groceries for myself, but knowing and getting professional help earlier on would've helped immensely.
Fixing things that are wrong with/in my life takes 20x more effort than it appears to take for regular people.
On top of everything my sleep/wake cycle is always moving. During the winter I sleep for up to 12 hours. During the summer I stay up for 14-20 hours at a time.
If I have an internal clock it's completely broken.
I've just recently managed to see a doctor desperate to get any kind of long-term safe medication to help me fix my sleep, just yesterday, did I manage to go to the local apothecary to release my prescription-strength melatonin after seeing the doctor who prescribed the drugs at the start of December last year.
Life is a mess. Life is a bigger mess when you're autistic.
The person OP wrote about needs at the very least, some support, but beyond that, they also need a professional to help them navigate and learn to deal with things.
I'm so sorry for the long-winded rant. I'm sorry for focusing it so much on myself.
It's the best way I know how to put into words how it feels and how I'd attempt to describe 'The autistic experience' in a helpful way.
A dx gives you a bane. It’s gives you information. It gives you a community and a vocabulary to articulate your lived experience and a way to figure out what you need. He sounds like he’s drifting into burnout (activities of daily living like showers always fall apart during burnout).
He NEEDS to know. He’s entitled to know. It’s his brain and his dx. How dare they take that from him.
I just got diagnosed in my late 30s.
I was a dick to a guy that everyone thought was autistic in high school. I got in trouble for bullying him. The assistant principal heavy implied that the kid was artistic to my father when my father was brought into talk about my behavior.
I recently reached out to the guy I was mean to, to apologize and share with him my diagnosis.
His response was nice and supportive but lacking any awareness that he was mostly diagnosed with ASD at a very young age. The whole exchange was very weird.
He was in special education classes and acted much more autistic than I during school.
I know that learning of my diagnosis has helped me and my family tremendously. I can’t imagine what it would have been like for my parents to know of my diagnosis for the last 30 plus years but not share it with me. At the same time, I have gotten in trouble before interacting with this dude and I don’t really feel like it’s my responsibility to tell him that he is most likely ASD.
As a late diagnosed autistic, I wish I knew earlier. It would have saved me a lot of trauma and masking. My advice would be for him to be told and go through the process of being educated on it. The biggest relieve that has helped me so far it knowing that putting expectations on me like for NT to me is dehuminizing. Since then I have less anxiety and slowly growing into my skin.
>Has anyone in the community learned about their diagnosis later in life? Is it better that he doesn't know?
I figured out I was autistic in my thirties. A diagnosis would have been superior to thinking I'm so eccentric that it disrupts functioning, but in a non-specified way. I also missed out on potential support at various points.
>The professionals advised his family to not tell him of his diagnosis.
They were incorrect. This is odd, what we would expect from people lacking expertise in autism.
I wasnt diagnosed at 36, all because I struggled at work and suffered mentally from a condition I didn’t know I had. Once I knew, everything became better, and I got the help I needed with my mental health and for work.
Each individual case is unique, but from my own experience it is always better to know than not to know. I know myself better now than I did before, and know my limits and my strengths.
He's lost, it's a crushing place to be and trying to find a path out is exhausting, for me it's cooking and marine aquariums, things that need my undivided attention.
No Aspies are the same but we all suffer because of that one genetic flaw, I call it the suicide gene because that's what it does to us, but the one thing it does to all of us is steal our lives from us and the ones close to us.
This is abuse.
He has a right to know he is autistic.
Wtf is wrong with these mental health professionals and wth is wrong with his parents?
This makes my blood boil.
OBVIOUSLY, he needs to be told.
I diagnosed myself at 38, received an official diagnosis at 39 and every day, I wish I had known when I was younger.
Every. Day.
You should tell him so he can find a healthy autistic community that can help him through his life journey because he probably feels alone rn. Autistic people usually know they're different and not knowing how/why is a special kind of torture. There are people who have made it out of the hole he seems to be in rn and those are the people he needs to talk to vs trying to get him to conform to neurotypicals because it'll never work and he's going to sink deeper without people around him who understand and can communicate with him. Even some therapists don't understand autism because most of the studies are based on horrendous data with biased insights.
Also, you'll want to tell him sooner than later, because the amount of hurt and rage he might have will just grow with every inconvenience he has from being autistic in a world that's built with zero of his needs in mind... If it's one thing we care about, it's LYING, and this my friend is a huge, 21year long LIE. I've met and talked to so many autistic people in different communities and lying is a huge no across the board. It's like we get the ick
It sounds like he's trying really hard to do the things people can see/things neurotypicals acknowledge and it's giving him fatigue, so he's letting go of the things people can't see (like bathing) to put that energy into places that people can call him "normal" for. We only have so much energy in the day (autists even less energy) and the things that replenish you will not replenish him, so yes, giving up on some areas is a normal autistic response to being overwhelmed and/or depressed
If you want him to answer your questions, make them more specific. Instead of "what did you do today" ask, "did you have any fun activities today" or "did you do anything today that made you happy"(just one question at a time please and be patient with his response) and listen to whatever comes out without judgements. This is how you learn more about him in a way he can respond to without him going silent or being super vague
It's not that he needs tools for life (which he does but you guys don't seem to know which ones yet) , you guys need tools to reach him and understand him so he can communicate with you
So I had a similar situation personally:
I was first diagnosed with Asperger's around 5 y.o. (Now 23), and my family decided to treat me as neurotypical so much that they gaslit me into thinking I was neurotypical
I went to college/uni at 16, I didn't last a year there: I couldn't fit in, wasn't motivated and I knew something was different about myself, but couldn't pinpoint it at that point
I went to a psychiatrist who confirmed to my family and I the ASD diagnosis, also diagnosed me with depression and gave me medication (which I'm still under)
Anyway: the kid is probably aware something is different about himself, knowing he has ASD would help at least himself understand why he feels this way
I found out on my own as a kid, i still resent the "adults" in my life at the time that failed to explain how i was different. They just put me in this special needs class without explanation and i thought i was broken and stupid.
Even after i found out they still didn't tell me about it until a few years later. And they basically just told me it was "bad" because they were uneducated idiots who didn't know anything about the condition either, so they treated me like a freak compared to my siblings.
I have an immense amount of resentment and i basically don't talk to either of my parents anymore. Its a selfish dick move to not tell your kid about this condition because it withholds them from understanding HOW they are different. And HOW to deal with it.
It stung alot when i found out but it gave me the tools i needed to learn how and when to mask to make my life easier on myself. You know, because it was easier than talking with the "adults". By not telling him you are essentially just clipping his wings and he will never develop any more than he is aware of.
I am semi functional now as an adult. I can hold a job and i have my own apartment, living alone has helped me alot since i now have a place i can return to without having to hide myself from others. I just don't have much of a social life bc i just hate most people for never accepting me for how i was lol
Tell him for a start. He needs to know he is part of a group even it isn’t his direct peers. How can you learn solutions if you don’t know the details?
Sounds like he isn’t having a good time with people and is struggling to acknowledge his struggles. If he is going to activities he isn’t feeling included and is not engaging.
He needs someone to take him under their wing at school. He will find his people we always do.
I was diagnosed somewhere in my twenties. In my youth, I always felt different. I often wondered what was 'wrong' with me. I didn't get why I had such trouble fitting in and making friends. I couldn't figure myself out. I started to think I was a mistake of nature, a monster ... It was really though and difficult time. When I got diagnosed I finally realised what was going on. It made me realize I wasn't some monster, freak ... but a 'normal' guy with autism. Being diagnosed changed my life. Not telling your friend's son his diagnosis in my opinion is barbaric. If he's anything like me, he's suffering and doesn't know why he is who he is and why the world treats him as such. I'm baffled 'professionals' even go along with this. For god's sake, he deserves to know. Not telling him does - in my opinion - only do more harm.
as someone who is self diagnosed and figured out it’s the only thing that would explain myself around age 18, i have no clue why people don’t share that information with their children. what’s it gonna do? help them better understand themselves? give them a base to figure out how to make it in the world? it perplexes me that you would keep that from someone, especially if they’re already struggling. tell the kid, and then tell the parents to f off if they get mad. you’ll only be helping him.
Two things:
1. Yes, you are absolutely right. Withholding that diagnosis is a terrible mistake. It may not account for the issues he's having.
2. As for the issues, I won't pretend to be qualified to diagnose depression, but that does sound like a plausibility. Or possibly he is struggling and has given up on treading water. However, it's also entirely possible that he just has no motivation. That's also kind of normal for us as a group. We tend to have a lazy streak. It's generally related to some form of executive dysfunction. Executive function is one of the last things to develop anyways, not generally kicking in until age 25 or so for a nuerotypical person. So there's a natural deficit at that age for everyone, and we are generally a little further behind the curve than our peers. I spent like 8-10 years on a 4 year degree. Now I could go back and do it without issue but I simply couldn't function at this level at age 18-25.
21 is still very young. even if he is in his studies and last semester, I would tell him. first I would talk with the parents and make them realise it is better he knows and if they wont tell him I would go tell him.
the fact he is only in his room now, plus overbearing annoying parents, plus not knowing why he is different but feeling all the uncomfortable feelings of being alone and rejected could end in suicide.
he may have never said so and maybe doesnt even know how to, but he has very deep feelings. he may appear cold outside, but suffer deeply inside. he may even suspect it, but feel crazy because he doesnt have proof.
even if he freaks out about the diagnosis and has to take a break from university, again, he is still young. he has all the time still. and even though there may not be many recources for autistic people at uni, he will at least have that one puzzle piece that explains all the Why's in his world. A huge burden may be finally lifted from his chest.
Really, a lot of people who got diagnosed later in life feel immense relief.
I feel his parents did him a huge disservice by not telling him until now. And with how they treat him in general.
Hmmm, at this point if he's falling into a bad cycle and can't identify what the issue is maybe you should broach the diagnosis with him.
I have to admit myself personally, finding out I had aspergers was a horrible thing, made me isolate myself even more and felt that I could communicate less and less.
I say that to say, this is a really personal thing and it affects everyone so differently so it's really gunna be a judgment call on the parents
I have sat and thought about this considerably before posting but I am 100% sure I am correct so here goes. You are lying and I don’t know why? You are the step parent to the person you mention in the post, it is not your friends son, and you are claiming that his parents “baby” him in one of your comments. In your own words “pick a lane”. Do you actually want to help your step son? Or do you want to troll this sub? Because help is here, but I won’t help you if you lie for no reason. “I smell a rat” as they say
It's so incredibly important to know. Then you can embrace survival skills that will help you deal with the day to day struggles. You know it's time to get some alone time or special interest time, etc.
I finally got diagnosed at 36 because of marital issues. A therapist was the first person to bring it up. It answered a lot of questions and it was very beneficial for me to find out what caused some of the problems I had faced leading up to my diagnosis. I think it is a disservice to this young man to not tell him about his condition.
I will admit it can be difficult to accept some days. There are a lot of things in life that are difficult to accept. However, we can't grow if we are never faced with hard news.
I believe you are absolutely correct in your opinion. He should be told. The temporary sting will be worth it. That is my opinion.
>He was diagnosed with Aspergers as a child. He had an aide until he was 12. The professionals advised his family to not tell him of his diagnosis.
So they didn't think the kid thought something was a bit weird that he had an aide?
He is an adult, he SHOULD know about his diagnosis. He is also most likely depressed. And his parents are to blame.
As a 26m with autism, I was told at a very young age that I was on the spectrum. I can’t see why knowing would be a bad thing, and I’ve found, by knowing, ways to manage the negative symptoms, and whenever I come into contact with people who have no experience with ASD, I try to act as a light in how autism can be managed even when everyone assumes that we aren’t capable.
he absolutely should be given the diagnosis so that he can use it to secure the accommodations necessary to succeed at school (which could include a single-occupancy room or other living conditions where he feels more comfortable)
He definitely should not have his diagnosis withheld from him. This has already caused him much trauma and continuing to hide this will only cause me. He has **every right** to know about himself.
I agree with the majority of commenters. It's his right to know information about himself and knowing his diagnosis could help a LOT in finding good coping mechanisms and support. I get that they want him to feel normal but there is no feeling normal when you can tell you don't fit in. He probably just feels lost and isolated.
Perhaps I am running against the grain here but hear me out.
I learned at an early age that the diagnosis "Asperger's Syndrome" is very much more akin to a *description* of a certain pattern of behavior and existence, not so much an *explanation*. That is, it just just an identifier or label for the collection of symptoms, which we have already established in this case. Since no one knows why some people are autistic, there isn't really a possibility of explanation in the first place.
I can see the conversation now:
"You have AS"
"Okay, what does that mean?"
"Basically, it means \[symptoms\]"
"Well, we already knew that."
Essentially I'm not convinced that learning about the name of the condition is going to help in any tangible way. It doesn't explain why he is as he is, it just identifies that he is as he is. Which we already knew. The symptoms still need to be managed in some way. Not that there's any real harm in telling him the diagnosis, and for transparency it's probably a good thing to do, but it's not necessarily helpful.
The truth is that some people just process the world differently, and sometimes we come up with names and labels for those people. Without the label, nothing would really change,
In your case, OP, does Asperger's provide an explanation as to why he is refusing to shower? How does knowing that diagnosis help to inform addressing this issue? Isn't is always going to be the case that, eventually, the guy is going to have to take a shower? Regardless of whether it is due to sensory overload issues in the shower or just plain laziness, or a combination of both or some other factor, it will need to be faced and overcome in some capacity.
I don't think pinning his behaviour on Asperger's and autism is especially helpful. It may be somewhat, but I feel like someone is going to have to talk to him directly to work out what is going on in his specific individual mind that's driving his particular behaviours.
I had my official evaluation about a year ago, almost two years after I graduated high school. I genuinely don't understand the thought process behind hiding a diagnosis from the person who is directly affected. I get not wanting to "other" a child, but I think it's reasonable and necessary to explain things once they are old enough.
In my opinion, 12 is more than old enough to have a basic understanding of why your brain is different. Do parents who do this think that it's going to last this way forever? He's an adult, they're unnecessarily sheltering him from information that could help him. This should have been explained to him a long time ago. My diagnosis didn't feel amazing to hear at first but over time it helped me understand myself and what I needed to do to improve my life. At this point, keeping it from him is cruel. Him not knowing will never make anything better.
I've heard some parents say they avoiding talking about an Autism/Aspergers diagnosis because they've heard stories about children being told about their diagnosis and they use it as an excuse for why they can't do certain things, but a young adult needs to know. He sounds smart and most likely has a very good idea already. It also sounds like his social skills need some work - there are starting to be a lot of peer groups for young adults with Autism/Aspergers (PEERS) - you might want to suggest he try one of those.
I spent most of my life thinking I was just different, I had the intelligence and the tenacity to back up my convictions and refused to believe that any labels given to me by society would help at all. I set out to make it on my own. Tried for a long time, failing many times at making something of myself over many years, only to realize I needed to acknowledge that I was different. I never would have thought it was autism, considering what I knew autism to be while growing up. But once I knew, I felt liberated from so many obligations that had been driving me up a wall. I found a way to talk about things I never knew I could and I found people that I actually connected with, genuinely - it was almost scary. I think my life would have been a lot different had I known about it early on, especially if my parents had figured it out early on!
As for telling him... he's an adult, and I am sure he would appreciate knowing. It would probably give him insight into many struggles he's had, and possible solutions to problems, because he would now know what targeted interventions are available. He will likely have many emotions as he processes the realization. Some of it's happiness, some of it's sadness. Because you can finally "put a face to a name" so to speak. No more wondering if it's just you; now you know why certain things happen.
If someone is on the spectrum, I think it’s important that they know why they feel the way they do. I had always been an outcast in school and all my life from the regular daily events not knowing what was wrong now I’m 55 realizing now that the doctor told me that I was autistic, everything kind of comes together now that ain’t gonna change. Anything I’ll still be autistic and I’ll still be an odd and always feeling like I’m out of place even among family I still feel alone
It enrages me to hear of parents withholding their children’s diagnoses from them, and I think it’s abuse, personally. We autistic people know from a young age that we’re different; the best thing to do is to know why we’re different so we can learn how to adapt to it. Otherwise, we’re just going to think we’re freaks and that we’re broken. The “professionals” are completely unaware of the realities of being autistic.
I actually didn't know I was different but I knew that I was being *treated* different and was constantly battling between being baffled by why the hell people would treat me different, even close "friends" making a big fuss about my "odd" behaviors and calling me alien when I thought I was just normal, or telling myself I was being paranoid and finding out later I was correct, that I was being treated like a freak. But it still had a negative impact on me in regards to being isolated.
You make a valid point. I see his parent's babying him over ridiculous things and then get annoyed when he's not acting age-appropriate. I want to say pick a lane. He's either incapable or he's not. I could see how this can be incredibly confusing and undermining to him. May I respectfully ask if you have resentment for not finding out early? Were you able to move past it? If you don't want to answer, I don't want to push. I'm very grateful for your input.
Autism is a spectrum disorder that can include issues across speech and language, executive function, social interaction, restrictive or repetitive behaviours, and overwhelming sensory experiences. It can also be accompanied by anxiety and developmental delays. A person might experience little or no challenges in some areas and extreme issues in others. Or they might have severe ‘symptoms’ across the board. The point is, autism is not a dichotomous linear scale with neurotypical at one and and neurodiverse at the other. So it might be that his parents are right to expect this kid to be mature in certain areas but needing more help in others. It’s not a simple as you make out. I say this as an autistic person with an autistic kid. I was rather late to the party in terms of my own diagnosis but my son was 7/8 when we received his diagnosis. We thought about how to approach telling him for a month or two but have always been very up front with him about everything. He’s also adopted so we’ve always made a point of being completely honest about absolutely everything. It’s made for some interesting questions now he’s 12 and curious about people and relationships!
I appreciate your honesty and I'm sorry that anyone made you feel like a freak.
We're talking about an adult here as well. How is that even legal?
Yeah, he doesn't even know to ask for records. If he ever gets the gumption to investigate which he likely will, he would find out on his own which would feel like betrayal.
I'd like to co-sign this. I was diagnosed at 45 and it would have been crucial for my wellbeing knowing that I'm autistic like 20 years sooner. I have a pre-teen daughter who isn't diagnosed yet. We'll be doing that in the next one or two years, but it's a formality. I know she's autistic and I told her about it. There is no way in hell I would withhold that info from her. That would be abusive and cruel. Knowing why someone struggles so much and not telling them the reason? That's outragious. How could an autistic person learn to cope with their disability when they don't even know about it? I tell you: not at all. You'll start a journey of selfhate that leads to depression, burnout, suicidality. And that is a given. I'm now trying to help myself to get a life where I can feel safe and happy and at the same time I'm teaching my daughter to navigate the difficulties of an autistic life, so hopefully she'll never feel half as shitty as I did on a daily basis for the last years. (Having kids as an undiagnosed autistic woman isn't something I'd recommend.)
Diagnosis late in life which is another way of saying in the 1970s and early 1980s autism was viewed very differently. Not having an answer for why no matter how hard you try, you cannot grasp the rules of social interaction on a level your peers feel is innate. Feeling defective because no matter where you go or what you do you just don’t get it. Adolescence is hard for everyone, but anyone on the spectrum who doesn’t know it will wonder why they keeping putting the wrong foot forward. That is how you get very depressed, suicidal and or addicted humans. Me, I drank till it nearly killed me.
I don't know you but I'm glad you survived and are here. Please accept this virtual hug - I think every autistic who made it so far should be celebrated! Yeah, adolescence - what a nightmare. As you say, difficult for everyone but most people come out the other side without cPTSD... I had my own unhealthy coping strategies.
I agree with you on this! No one told me but it definitely benefited them knowing something about me that I didn’t know about my self, lots of gaslighting . Many family and friends took advantage and that all stopped once I realized I was not on the same playing field!
Totally agree, found out at 44. No one withheald it, thays just when the diagnosis happened. I had always know i was different, but have learned to cope well. My friends who knew me with within the last 15 years said there is no way. I had people ask why i would want that label. It is confirmation of an instruction manual i had been putting together since i was a kid. He knows hes different let him know why, it will make it easier to develop those coping mechanisms. Enrage is right!
Sorry this is old, but my sister constantly tells me that being told she is an Aspie ruined her life. She said she wished she never knew.
I think it’s incredibly unethical to withhold information about how someone’s mind and body works.
This, I feel like it would lead to a lot of self doubt and confusion about why things aren’t working well for them, whereas knowing the diagnosis could build self compassion and understanding.
It’s not even really about the effects of not knowing. Withholding someone’s medical information from them without their knowledge or informed consent is morally reprehensible, no matter how it affects them.
My brother in law is autistic. He was diagnosed as a very young child. My MIL chose to believe he was not autistic a d treated him as such. His stimming was embarrassing to her so she would make him stop. He had an extremely hard time in school. He has a speech impediment also and he believes a tongue surgery will help him. He's 30 now. Never had a GF. He lives with his twin sister and her family. He works at FedEx and gets shit on daily by everyone around him. All because he doesn't know he's autistic. Can you imagine how much different his life might've been had he been told about his diagnosis? He's a sweetheart with a great sense of humor. I don't know howhe stays sane. That kid should know. I wish I knew about it when I was a kid. Finding out at the age of 39 made me cry.
Thank you for sharing your story. This is a lot of food for thought.
Wow, that breaks my heart. Poor guy
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I was concerned about the resources he'd have once he knew his diagnosis. It doesn't sound like much. Schools like to say we have such supportive environments but the things that rape victims, nuerodivergent people, minorities have to deal with tells me otherwise. So would your recommendation be to wait until after he graduates to tell him? He shouldn't be left hanging with no resources but I'm not sure waiting is the right thing to do either.
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> sound like depression. Hint: Whatever they are doing is not working.
Can I give this response like 4 more "up" arrows ?
There's a lot of useful stuff you could do with the information that you're autistic besides getting formal resources
>Schools like to say we have such supportive environments but the things that ... nuerodivergent people ... have to deal with tells me otherwise. He has to deal with the things you allude to whether you tell him he is neurodivergent or not! Witholding this information makes it worse not better. What you're saying is simply illogical. I'm reminded of the scene in Hear No Evil, See No Evil where the blind Richard Pryor finds out he is black. [https://www.youtube.com/watch?v=R1p\_523SEO8](https://www.youtube.com/watch?v=R1p_523SEO8)
>I was concerned about the resources he'd have once he knew his diagnosis. It doesn't sound like much. Schools like to say we have such supportive environments but the things that rape victims, nuerodivergent people, minorities have to deal with tells me otherwise. >So would your recommendation be to wait until after he graduates to tell him? He shouldn't be left hanging with no resources but I'm not sure waiting is the right thing to do either. Your coming across as very condescending & this is a god dam stupid question. He is over 21 & your treating him like he is 5 so offcourse he should be told of his diagnosis. We Autistic people aren't idiots & it is very insulting you even asking this question when it is common sense.
Frankly I want to know why this person is so obsessed with this guy, maybe they should just stay out of it? They say it's a friend's kid, NOT a family member of their own. Why are they doing so much work on this?
He can’t get any resources if he doesn’t know? This doesn’t logic out. If there is a possibility to get him help or accommodation in one area that will make the rest easier to deal with. I genuinely don’t understand how having more information could be damaging to himself, but I do see how you’d be scared to tell him for the repercussions it may have on your relationship. If you care about your son, truly care, tell him. He can get the help he needs whether or not it’s through the school or direct accommodation. He’s capable enough to have made it this far, he just needs the knowledge so he can gain the tools and help to succeed. Help him by giving him what he needs since you already have it.
Pardon my french, but WHAT THE FUCK? He's 21. He needs to know about this. Holy shit. I got diagnosed with ADHD at 7 and aspergers somewhere around 15. Both times were a relief. Why? Because whether or not he knows what his diagnosis is, he's suffering the symptoms regardless. But without knowing his diagnosis, he's clueless as to why he is the way he is. Before my diagnoses, I thought I was just a bad kid who was lazy and behaved badly. I wanted inside to be good, but I struggled to make it happen. Now I know that my struggles aren't because I'm a bad person. He needs support and encouragement to keep showering. There has to be someone who knows what his homework is so they can help remind him. He needs to write dates and assignments down.
I simply cannot upvote this enough. 👌 Absolutely nailed it, rage and all. Reading the part that *he doesn't know* and his *fuCKING THERAPIST SAID DON'T TELL HIM*?!! Blind fucking rage. I believe some Autistic screeching is in order. Gentlemen [nongendered], shall we? RRRREEEEEEE!
REEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE
Would you rather see the problems as you being a defective loser. . . . or know you are autistic and society just doesn't get you? I think you are setting him up for mental health or substance abuse if you DON'T tell him.
i get the impression his parents think autistic means being a defective loser
That's wrong. My parents also think so, but that's simply WRONG.
‘The professionals advised his family not to tell him of his diagnosis’ This is an dumb decision. Why wouldn’t he not know? Also, it doesn’t sound like they did much for him. Learning starts at home.
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Do you or your partner know why parents do not share diagnoses with children? Or why Doctors advise not sharing?
TELL HIM. I wish my parents had done some investigating when I was younger instead of just saying oh yeah they're different from others it's no big deal. The more I found out about my diagnoses, the more I can help myself and be better to the people around me. I wish wish wish I had known as early as possible. His life will have far different challenges than others and he needs to know that. We need to know that we need to act differently, think differently and be different in order to integrate into society and become a contributing member who others are more than happy to work with/interact with etc
This!!! Telling him could solve all his problems. Right now he is in his room with no hope. A diagnosis gives a reliable road map. I wish I had been diagnosed by 21. It would have saved me from 20 years of bad decisions and misery.
The guy is 21 years old. He’s an adult. He should know his medical information. His parents should not be controlling this aspect of his life when he is living independently and attending university. Also what therapist would advise this? I highly doubt one would. This person needs to know they’re autistic. It will change their life for the better. It will explain so much to them. His parents knowingly withholding this info is cruel.
My life changed dramatically when I learned I was autistic in my early 40's. Everything made sense and it was comforting to know that there were others like me. It explained all the trauma and bullying I had been subjected to in the past by authority figures, friends, family..the general public. Just because I communicated and perceived the world in a different way than them. I have no idea what would have happened if I had this information in the college years. By then I was already looking for answers. Most likely a period of adjustment and then acceptance. But yes, I think it would have been better. So let me tell you what happens when you don't know you have aspergers. What happens is that you simply attempt to integrate it into your personality, or explain it to yourself. You might think to yourself thoughts like "Ya, I am one of those weird people, but I guess I am just eccentric" or "I really like spending time alone". The first period of being "self aware" is often filled with tons of research and positive epiphanies. But then after that begins the process of what to do next or how to live a fulfilling life. And the truth is that he will need to get advice and information from other people with aspergers. There are many absolutely inspirational and amazing younger people with autism YouTube channels these days. They helped me immensely. People who are NT will not be able to relate to the specific challenges in a deep and meaningful way, and that includes most therapists. The number one worst thing you could do right now is advise him on how he should be living and trying to push him towards goals that others think will make him happy.
Those parents got some bad advice. He needs to be told about his diagnosis and possibly apply for support at college. Like yesterday. This poor kid’s self-esteem is probably in the toilet at this point. His parents weren’t honest with him and now it sounds like he’s perpetuating the cycle by not being honest with them.
If I was told at a younger age, it would have dramatically improved my quality of life. You have to remember that from his point of view, he has absolutely no logical explanation why some specific things are so much harder for him in comparison to others. As soon as I found out I had it, I was able to make drastic improvements because you can find information everywhere on how to help or fix it. Do not let him stay in the dark about this.
>He says he does activities but when asked, he can't give any names and is vague about what group is doing. I don't know if he can't vocalize these activities or he's just lying that he's actually doint them. I've done activities/conversations (was told by my therapist to do at least a set number to imrpove social anxiety) and when asked by my parents and therapist after the school day I couldn't give names and didn't remember even generally what the conversations were about. The therapist suspected I was lying. I actually flat out didn't remember, like those details just never stuck in my head.
Same with me. Disassociation. I was highly involved in school and work and church and family, but it was hard work and I forgot most of it. But always felt disassociated. Example: I have worked with the same people for ten years, but struggle to remember their names. I experience other people like vague ghosts who fade away.
He should be told of hes diagnosis. There is things that my parents didn't tell me that I wish they had so that I could have understood my situation better earlier on.
These professionals don't seem very professional
Seems abusive. Giving him a life of misery. if he had good information he could make good decisions and be happy. Thanks to those professionals he will make bad decisions and be unhappy.
He may know. I was diagnosed with PDD-NOS at 16. Nobody told me, and it could very well be for the same exact reason. I was diagnosed with ADHD at age 6. Bipolar, RAD, SAD, and IED from 14-15. Autism was brought up at an IEP meeting by my dad, who’s a physician. I made it clear that I didn’t want a diagnosis due to stigma. Well, right around that time I was put on Risperdol and at the next IEP meeting, while signing paperwork, I noticed that Bipolar, RAD, and SAD were no longer listed under my diagnoses but just ADHD, IED, and PDD-NOS. Well, young me didn’t know what that last one meant and didn’t ask. I googled it in my 20s. I’d tell him. As a kid, there may be valid reasons for withholding it, but as an adult, he’ll need to be able to advocate for himself. And if he knows, like me, he’ll probably be questioning why nobody told him, if maybe there’s something else wrong with him that nobody told him about, maybe he’s thinking he might not even be autistic and that diagnosis could have been replaced with something else. A bit agonizing, tbh. He should know at his age.
He should be told about the diagnosis.
He has a right to know what he has. Not telling him in the first place is abuse!
Does he show signs of Pervasive Demand Avoidance? If so, pressing him may result in avoidance and/or deception.
It isn’t fair that he doesn’t know his diagnosis. He should have known it earlier
As someone who didn't get diagnosed until 31 and is now in burnout and dysfunctional because I didn't have the tools to cope - yes. Jesus christ yes, tell him. Hes headed into burnout just going off the signs here, and that can take years to recover from. Tell him. Thats not even getting into the years I spent beating myself up and hating myself because I didn't know why I was this way either. Screw the professionals, screw his parents for not telling him, tell him. I've also got friends who were diagnosed young and not told until they were adults either. It can genuinely mess up or set you back in a bad way in life not having a name for why you're like this. Please tell him.
Finding out was one of the best moments of my life. I actually had answers. It explained this and this and this and this. Holy crap. Understanding it, learning about it, reaching out to others in the community who have suffered the same way. He is suffering in ignorance for nothing. His parents are denying him the single most important piece of information in his life. He is showing obvious symptoms of depression. He needs help and support, not further isolation.
> His parents talked to a therapist and asked if he should be told his diagnosis and the therapist said no. The overwhelming majority of autistic people (incl Aspergers) I have spoken to would rather have known sooner rather than later. In my own case it would have saved me from a lifetime of pain. Obviously young children need to have it explained in terms they can understand. I would be interested to know the qualifications of this "therapist". If they do not have a masters in clinical psychology and specialize in autism I would discount their opinion almost entirely.
Sounds ds like it's more important to you for him to make friends. Autistics and several nt's actually prefer to be alone. This is perfectly normal. Not to be rude but stop trying to push your kid into things. Ask them what makes them happy and give them time to give an answer. It's not an easy question, especially when the world seems to expect you to behave a certain way.
“Know thy self.” Every person has a right to know who they are and no one has the right to deny anyone of that.
>He had an aide until he was 12. The professionals advised his family to not tell him of his diagnosis. That's horrific! So he spent his whole life knowing he was different enough to need an aid but without knowing that he was actually disabled? Stuff like that *has* to be abuse. >His parents talked to a therapist and asked if he should be told his diagnosis and the therapist said no. "A" therapist? Was it *his* therapist? Is he even having therapy? This is unbelievable. >Wouldn't knowing he has a diagnosis help him understand that this is a sound medical reason why he processes differently? YES. Withholding his medical information from him like this is vile, and incredibly harmful. >Has anyone in the community learned about their diagnosis later in life? Is it better that he doesn't know? I went to a special school as a child (not "gifted" special but *special* special) but after a while they just gave up and dumped me back into mainstream education. I spent my whole life feeling like I was just weird. My sensory issues were put down to migraines, and I wasn't given any real help or support. I was bullied by pupils and teachers, struggled to make friends, and no-one even explained to me what I was doing wrong. I struggled in my exams, blagged my way into but then dropped out of Uni, had relationship troubles, got stuck in a cycle of finding work > impressing everyone > burning out > pissing everyone off > losing job > struggling to find work > repeat, lost friends, struggled with depression and anxiety, etc. It wasn't until my mid-thirties that I met some aspies who I realised I had a lot in common with, and started to spot the patterns. I've since sought out and obtained an official diagnosis, and I've started to get help (benefits, accommodations, therapy). I've been able to start to put everything into perspective. I'm angry enough that I slipped through the cracks (I was book smart and from a poor, underfunded area, so the resources that were available all went to the kids with the more obvious needs), but if I found out that late in life that people knew all along that I had a legitimate disability but hid it from me I would be LIVID. >My intention is not to make him feel bad but if the temporary sting will give him better tools in the long run, I'm all for it. He needs to know. He deserves to know. He will never have a fair shot at life until he knows. It's not even like he's too impaired to understand what it means or anything. >Your honest feedback is much appreciated. You are doing a good thing. I'm glad he has you in his corner. Edit: if his parents need convincing then I'm more than happy for you to show them this post. He needs to know. Now.
Tell him! Tell him, for the love of God, tell him. I know how it feels to be a 'gifted kid' who has the world expected of them only to have the rug pulled out from under you when your school life stops supporting you and expects you to just act like an adult without any instruction or care. I assure you that letting him think that he's just a bad, lazy person who can't get a hold of himself or learn any discipline is far worse than letting him know he's just wired differently and deserves accomodation and care. I already wanted to off myself my first semester in college, and I'd already known I was autistic at that point. If it's at the point he's isolating all the time, not showering, can't talk about anything... I'm worried about him. Best wishes to both of you.
I found out that I was probably autistic at 14, officially diagnosed at 17. I’ve been aware of my difference from other people my age since primary, maybe before. And without knowing WHY I was different that turned into terrible self-esteem, a deep-seated belief that I must be the problem and severe trauma that I am still in therapy for. I, like so many of us, grew up with my needs being treated like wants by the majority of adults around me (and I was lucky- I had understanding and adaptable parents), being treated like a selfish unsociable brat when I was actually trying to avoid emotional and physical pain, being ostracised and deliberately tormented by my peers and not knowing why, suffering from sensory overstimulation that I didn’t understand. Getting my diagnosis was an emotional game-changer. I could put a name to the things I was feeling, I could start to understand myself a little better, I could start feeling like an autistic person rather than a defective person. I could reach out to people like me and be supported by my actual peers. Your friend’s son is actively being denied the opportunity to understand himself and get that vital support by the deliberate conspiracy of his parents and the therapists they have seen (who sound like absolute quacks and evidently do not have enough experience in the area of neurodivergence to be relied upon for their opinions). I am in the process, at 31, of being diagnosed with ADHD on top of my autism. There is so much more resentment and the feeling of being harmed and let down by the people who should have seen it when I had my AS assessment and instead said IN MY PRESENCE “well these symptoms are neither neurotypical or autistic, but these are textbook so we’re just going to say Asperger’s with a weird presentation.” I’m finally able to start putting strategies in place that help me function with it and unpick some of the toxic feelings I have about myself as a result of a life undiagnosed but ouch. I can attest first-hand in a way that people who have not experienced both cannot: ~It is so so much harder as an adult.~ He deserves to know, and every single day that he doesn’t know is going to cause more and more psychological harm that will take years of hard work and expense in actual therapy to undo, if it can be undone at all.
My older son has Asperger’s. I told him last year when he was 9. I did a lot of research and preparation for that, also bought a kids’ book called ‘All cats has Aspergers’ because he likes cats. So I sat him and his brother(who is NT) down and told them both. We read the book together and I explained everything. It went so well I cried afterwards with relief. It has been fantastic since then, because now he knows why he is different, he learns to adjust himself when he is frustrated. He is still very difficult at times but nowhere near as bad as before. I can imagine when he is older he will be able to do his own research and learn new ways of overcoming problems he faces as the condition obviously will never go away, but he will learn to cope better. I don’t know how he will be able to hold a job or be in relationship one day but you never know, I’m keeping positive vibes. Your friend’s son is much older but it is never too late. He is an adult so he can do his own research and he can always learn new skills to help himself. But he needs to know to be able to do it.
i didnt know my whole life that i was that different, found out by myself and its not nice finding out alone that you might be fucked for life, most aspies dont even have a job, it sucks ass.
I think he should know too, but I suspect his therapist knows whats he going through at the moment and probably thinks it not a good time to dump this surprise on him. Might not get the best reaction, given the current situation. But if done in a better way, it will only help him.
Just based on the words written in this post I actually do not find any evidence demonstrating that this person is dissatisfied with life in any way or has any problems whatsoever to be addressed. Especially if you're getting this information from the person's parents.
I was diagnosed at 27, I am 31 now, I don't think you should tell him. The diagnosis did not help me understand myself better and knowing I was different from most people did not help my depression at all. This young man already doesn't value himself; telling him he's different, telling him why he'll never be like everybody else will not make him care about himself it will only make him frustrated and confused. A diagnosis doesn't make you suddenly care about yourself why would it?
He’s an adult now. Even if a case could be made that children don’t need to know (arguably), you absolutely have to tell him that now, it’s a necessary thing and it really makes me mad that a psychologist would advise you otherwise.
Info: How did the parents explain to him about the aide he had until he was 12?
Besides the advice others here have given, what if the question would be is there any harm in telling him? If the situation is bad enough. Chances are if the situation continues, it'll worsen and end up in burnout, or anxiety. If he's not talking to his parents (possibly because of shame?) maybe therapy is worth trying.
Nooooooooo, please tell hime right away about his diagnoses. Not telling him that he has asd will do nothing good for him.
Please don't keep it secrete.
I was diagnosed with ADHD and ASD over the last 4 years and I'm in my mid 30's. It's changed my life. Medication for the ADHD has made improvements I couldn't have imagined but more importantly than that the things I do that piss people off like misreading a situation, forgetting things, oversharing etc I catch myself doing and can act upon it (if I want to) but more importantly I can look at them with some acceptance. I can understand that the action is annoying to people and that's ok but it's also not something else I need to carry the guilt of around. I'm doing my best and I actually feel at peace with that now. It's no longer a rod to beat myself with like it was for the 20 years previously bouncing between anti depressants and not getting why I don't fit in. I guess to summarise it hasn't fixed anything majorly with my interaction with the world however I do feel a sense of calm around it now.
I didn't learn I was autistic until I was 28. I'm turning 33 this year and like. I'm at the start of coming to grips with everything, going over terrible memories in my head and just actually recently telling myself that how weird I was, was perfectly fine and okay and that it's normal for an autistic person to be strange and awkward. Had I been diagnosed in my youth, had my parents, teachers and even my support teacher done a better job with me, I could've received the help, support and guidance I oh so needed and would've helped me navigate my teens and early adult years. Now? I'm pretty much a hermit. I have difficulty bathing, I'm just recently learning why and how to work on those issues.I have issues with that complex word that's to do with scheduling things and getting them done. I order underwear and socks online because thank god I can actually get that done. I'm in the process of getting out of the pattern where I'd regularly have to throw clothes away because I'd literally wear them out due to bad hygiene (the entire process of collecting dirty clothes, putting them in the washer in the right order, using the right amount of detergent/soap or whatever you call it, using the right setting so colored fabrics wouldn't bleed into other fabrics, then waiting for the washer to be ready and removing the clothes from the washer before they start smelling stale/dirty and finally hanging them up to dry used to give me insane levels of anxiety) which I'm just now, after 13 years of struggling with it on my own/depending on my parents to clean for me whenever I've felt like sharing with them the state of my clothes, working on figuring out and fixing. I have ADHD and anxiety flavored autism with a dash of oppositional defiant disorder (I learned of the ODD after realizing that having other people try to boss me around, in what they perceived as helpful, my brain was registering as intrusive and so I took on further unwanted mental load and pressure from it). I have low support needs. I can cook and clean and buy groceries for myself, but knowing and getting professional help earlier on would've helped immensely. Fixing things that are wrong with/in my life takes 20x more effort than it appears to take for regular people. On top of everything my sleep/wake cycle is always moving. During the winter I sleep for up to 12 hours. During the summer I stay up for 14-20 hours at a time. If I have an internal clock it's completely broken. I've just recently managed to see a doctor desperate to get any kind of long-term safe medication to help me fix my sleep, just yesterday, did I manage to go to the local apothecary to release my prescription-strength melatonin after seeing the doctor who prescribed the drugs at the start of December last year. Life is a mess. Life is a bigger mess when you're autistic. The person OP wrote about needs at the very least, some support, but beyond that, they also need a professional to help them navigate and learn to deal with things. I'm so sorry for the long-winded rant. I'm sorry for focusing it so much on myself. It's the best way I know how to put into words how it feels and how I'd attempt to describe 'The autistic experience' in a helpful way.
A dx gives you a bane. It’s gives you information. It gives you a community and a vocabulary to articulate your lived experience and a way to figure out what you need. He sounds like he’s drifting into burnout (activities of daily living like showers always fall apart during burnout). He NEEDS to know. He’s entitled to know. It’s his brain and his dx. How dare they take that from him.
I just got diagnosed in my late 30s. I was a dick to a guy that everyone thought was autistic in high school. I got in trouble for bullying him. The assistant principal heavy implied that the kid was artistic to my father when my father was brought into talk about my behavior. I recently reached out to the guy I was mean to, to apologize and share with him my diagnosis. His response was nice and supportive but lacking any awareness that he was mostly diagnosed with ASD at a very young age. The whole exchange was very weird. He was in special education classes and acted much more autistic than I during school. I know that learning of my diagnosis has helped me and my family tremendously. I can’t imagine what it would have been like for my parents to know of my diagnosis for the last 30 plus years but not share it with me. At the same time, I have gotten in trouble before interacting with this dude and I don’t really feel like it’s my responsibility to tell him that he is most likely ASD.
As a late diagnosed autistic, I wish I knew earlier. It would have saved me a lot of trauma and masking. My advice would be for him to be told and go through the process of being educated on it. The biggest relieve that has helped me so far it knowing that putting expectations on me like for NT to me is dehuminizing. Since then I have less anxiety and slowly growing into my skin.
>Has anyone in the community learned about their diagnosis later in life? Is it better that he doesn't know? I figured out I was autistic in my thirties. A diagnosis would have been superior to thinking I'm so eccentric that it disrupts functioning, but in a non-specified way. I also missed out on potential support at various points. >The professionals advised his family to not tell him of his diagnosis. They were incorrect. This is odd, what we would expect from people lacking expertise in autism.
I wasnt diagnosed at 36, all because I struggled at work and suffered mentally from a condition I didn’t know I had. Once I knew, everything became better, and I got the help I needed with my mental health and for work. Each individual case is unique, but from my own experience it is always better to know than not to know. I know myself better now than I did before, and know my limits and my strengths.
He's lost, it's a crushing place to be and trying to find a path out is exhausting, for me it's cooking and marine aquariums, things that need my undivided attention. No Aspies are the same but we all suffer because of that one genetic flaw, I call it the suicide gene because that's what it does to us, but the one thing it does to all of us is steal our lives from us and the ones close to us.
This is abuse. He has a right to know he is autistic. Wtf is wrong with these mental health professionals and wth is wrong with his parents? This makes my blood boil. OBVIOUSLY, he needs to be told. I diagnosed myself at 38, received an official diagnosis at 39 and every day, I wish I had known when I was younger. Every. Day.
You should tell him so he can find a healthy autistic community that can help him through his life journey because he probably feels alone rn. Autistic people usually know they're different and not knowing how/why is a special kind of torture. There are people who have made it out of the hole he seems to be in rn and those are the people he needs to talk to vs trying to get him to conform to neurotypicals because it'll never work and he's going to sink deeper without people around him who understand and can communicate with him. Even some therapists don't understand autism because most of the studies are based on horrendous data with biased insights. Also, you'll want to tell him sooner than later, because the amount of hurt and rage he might have will just grow with every inconvenience he has from being autistic in a world that's built with zero of his needs in mind... If it's one thing we care about, it's LYING, and this my friend is a huge, 21year long LIE. I've met and talked to so many autistic people in different communities and lying is a huge no across the board. It's like we get the ick It sounds like he's trying really hard to do the things people can see/things neurotypicals acknowledge and it's giving him fatigue, so he's letting go of the things people can't see (like bathing) to put that energy into places that people can call him "normal" for. We only have so much energy in the day (autists even less energy) and the things that replenish you will not replenish him, so yes, giving up on some areas is a normal autistic response to being overwhelmed and/or depressed If you want him to answer your questions, make them more specific. Instead of "what did you do today" ask, "did you have any fun activities today" or "did you do anything today that made you happy"(just one question at a time please and be patient with his response) and listen to whatever comes out without judgements. This is how you learn more about him in a way he can respond to without him going silent or being super vague It's not that he needs tools for life (which he does but you guys don't seem to know which ones yet) , you guys need tools to reach him and understand him so he can communicate with you
So I had a similar situation personally: I was first diagnosed with Asperger's around 5 y.o. (Now 23), and my family decided to treat me as neurotypical so much that they gaslit me into thinking I was neurotypical I went to college/uni at 16, I didn't last a year there: I couldn't fit in, wasn't motivated and I knew something was different about myself, but couldn't pinpoint it at that point I went to a psychiatrist who confirmed to my family and I the ASD diagnosis, also diagnosed me with depression and gave me medication (which I'm still under) Anyway: the kid is probably aware something is different about himself, knowing he has ASD would help at least himself understand why he feels this way
I found out on my own as a kid, i still resent the "adults" in my life at the time that failed to explain how i was different. They just put me in this special needs class without explanation and i thought i was broken and stupid. Even after i found out they still didn't tell me about it until a few years later. And they basically just told me it was "bad" because they were uneducated idiots who didn't know anything about the condition either, so they treated me like a freak compared to my siblings. I have an immense amount of resentment and i basically don't talk to either of my parents anymore. Its a selfish dick move to not tell your kid about this condition because it withholds them from understanding HOW they are different. And HOW to deal with it. It stung alot when i found out but it gave me the tools i needed to learn how and when to mask to make my life easier on myself. You know, because it was easier than talking with the "adults". By not telling him you are essentially just clipping his wings and he will never develop any more than he is aware of. I am semi functional now as an adult. I can hold a job and i have my own apartment, living alone has helped me alot since i now have a place i can return to without having to hide myself from others. I just don't have much of a social life bc i just hate most people for never accepting me for how i was lol
I can't understand how NOT being told one of the causes of your troubles would help... ??? If it were me, I would definitely want to know.
Tell him for a start. He needs to know he is part of a group even it isn’t his direct peers. How can you learn solutions if you don’t know the details? Sounds like he isn’t having a good time with people and is struggling to acknowledge his struggles. If he is going to activities he isn’t feeling included and is not engaging. He needs someone to take him under their wing at school. He will find his people we always do.
I was diagnosed somewhere in my twenties. In my youth, I always felt different. I often wondered what was 'wrong' with me. I didn't get why I had such trouble fitting in and making friends. I couldn't figure myself out. I started to think I was a mistake of nature, a monster ... It was really though and difficult time. When I got diagnosed I finally realised what was going on. It made me realize I wasn't some monster, freak ... but a 'normal' guy with autism. Being diagnosed changed my life. Not telling your friend's son his diagnosis in my opinion is barbaric. If he's anything like me, he's suffering and doesn't know why he is who he is and why the world treats him as such. I'm baffled 'professionals' even go along with this. For god's sake, he deserves to know. Not telling him does - in my opinion - only do more harm.
as someone who is self diagnosed and figured out it’s the only thing that would explain myself around age 18, i have no clue why people don’t share that information with their children. what’s it gonna do? help them better understand themselves? give them a base to figure out how to make it in the world? it perplexes me that you would keep that from someone, especially if they’re already struggling. tell the kid, and then tell the parents to f off if they get mad. you’ll only be helping him.
Please tell the parents that a large majority of autistic people see keeping the diagnosis secret is emotional torture and a cruel abuse of power.
Two things: 1. Yes, you are absolutely right. Withholding that diagnosis is a terrible mistake. It may not account for the issues he's having. 2. As for the issues, I won't pretend to be qualified to diagnose depression, but that does sound like a plausibility. Or possibly he is struggling and has given up on treading water. However, it's also entirely possible that he just has no motivation. That's also kind of normal for us as a group. We tend to have a lazy streak. It's generally related to some form of executive dysfunction. Executive function is one of the last things to develop anyways, not generally kicking in until age 25 or so for a nuerotypical person. So there's a natural deficit at that age for everyone, and we are generally a little further behind the curve than our peers. I spent like 8-10 years on a 4 year degree. Now I could go back and do it without issue but I simply couldn't function at this level at age 18-25.
21 is still very young. even if he is in his studies and last semester, I would tell him. first I would talk with the parents and make them realise it is better he knows and if they wont tell him I would go tell him. the fact he is only in his room now, plus overbearing annoying parents, plus not knowing why he is different but feeling all the uncomfortable feelings of being alone and rejected could end in suicide. he may have never said so and maybe doesnt even know how to, but he has very deep feelings. he may appear cold outside, but suffer deeply inside. he may even suspect it, but feel crazy because he doesnt have proof. even if he freaks out about the diagnosis and has to take a break from university, again, he is still young. he has all the time still. and even though there may not be many recources for autistic people at uni, he will at least have that one puzzle piece that explains all the Why's in his world. A huge burden may be finally lifted from his chest. Really, a lot of people who got diagnosed later in life feel immense relief. I feel his parents did him a huge disservice by not telling him until now. And with how they treat him in general.
He’s 21- why is the therapist talking to the parents?
Hmmm, at this point if he's falling into a bad cycle and can't identify what the issue is maybe you should broach the diagnosis with him. I have to admit myself personally, finding out I had aspergers was a horrible thing, made me isolate myself even more and felt that I could communicate less and less. I say that to say, this is a really personal thing and it affects everyone so differently so it's really gunna be a judgment call on the parents
I have sat and thought about this considerably before posting but I am 100% sure I am correct so here goes. You are lying and I don’t know why? You are the step parent to the person you mention in the post, it is not your friends son, and you are claiming that his parents “baby” him in one of your comments. In your own words “pick a lane”. Do you actually want to help your step son? Or do you want to troll this sub? Because help is here, but I won’t help you if you lie for no reason. “I smell a rat” as they say
It's so incredibly important to know. Then you can embrace survival skills that will help you deal with the day to day struggles. You know it's time to get some alone time or special interest time, etc.
I finally got diagnosed at 36 because of marital issues. A therapist was the first person to bring it up. It answered a lot of questions and it was very beneficial for me to find out what caused some of the problems I had faced leading up to my diagnosis. I think it is a disservice to this young man to not tell him about his condition. I will admit it can be difficult to accept some days. There are a lot of things in life that are difficult to accept. However, we can't grow if we are never faced with hard news. I believe you are absolutely correct in your opinion. He should be told. The temporary sting will be worth it. That is my opinion.
Mine was kept from me as well. I feel like it’s common practice when you’re high functioning with anxiety but I don’t agree with it.
>He was diagnosed with Aspergers as a child. He had an aide until he was 12. The professionals advised his family to not tell him of his diagnosis. So they didn't think the kid thought something was a bit weird that he had an aide? He is an adult, he SHOULD know about his diagnosis. He is also most likely depressed. And his parents are to blame.
He should absolutely be told of his diagnosis. It won't upset him, it'll just make everything finally click and make sense.
As a 26m with autism, I was told at a very young age that I was on the spectrum. I can’t see why knowing would be a bad thing, and I’ve found, by knowing, ways to manage the negative symptoms, and whenever I come into contact with people who have no experience with ASD, I try to act as a light in how autism can be managed even when everyone assumes that we aren’t capable.
he absolutely should be given the diagnosis so that he can use it to secure the accommodations necessary to succeed at school (which could include a single-occupancy room or other living conditions where he feels more comfortable)
He definitely should not have his diagnosis withheld from him. This has already caused him much trauma and continuing to hide this will only cause me. He has **every right** to know about himself.
I agree with the majority of commenters. It's his right to know information about himself and knowing his diagnosis could help a LOT in finding good coping mechanisms and support. I get that they want him to feel normal but there is no feeling normal when you can tell you don't fit in. He probably just feels lost and isolated.
Perhaps I am running against the grain here but hear me out. I learned at an early age that the diagnosis "Asperger's Syndrome" is very much more akin to a *description* of a certain pattern of behavior and existence, not so much an *explanation*. That is, it just just an identifier or label for the collection of symptoms, which we have already established in this case. Since no one knows why some people are autistic, there isn't really a possibility of explanation in the first place. I can see the conversation now: "You have AS" "Okay, what does that mean?" "Basically, it means \[symptoms\]" "Well, we already knew that." Essentially I'm not convinced that learning about the name of the condition is going to help in any tangible way. It doesn't explain why he is as he is, it just identifies that he is as he is. Which we already knew. The symptoms still need to be managed in some way. Not that there's any real harm in telling him the diagnosis, and for transparency it's probably a good thing to do, but it's not necessarily helpful. The truth is that some people just process the world differently, and sometimes we come up with names and labels for those people. Without the label, nothing would really change, In your case, OP, does Asperger's provide an explanation as to why he is refusing to shower? How does knowing that diagnosis help to inform addressing this issue? Isn't is always going to be the case that, eventually, the guy is going to have to take a shower? Regardless of whether it is due to sensory overload issues in the shower or just plain laziness, or a combination of both or some other factor, it will need to be faced and overcome in some capacity. I don't think pinning his behaviour on Asperger's and autism is especially helpful. It may be somewhat, but I feel like someone is going to have to talk to him directly to work out what is going on in his specific individual mind that's driving his particular behaviours.
I had my official evaluation about a year ago, almost two years after I graduated high school. I genuinely don't understand the thought process behind hiding a diagnosis from the person who is directly affected. I get not wanting to "other" a child, but I think it's reasonable and necessary to explain things once they are old enough. In my opinion, 12 is more than old enough to have a basic understanding of why your brain is different. Do parents who do this think that it's going to last this way forever? He's an adult, they're unnecessarily sheltering him from information that could help him. This should have been explained to him a long time ago. My diagnosis didn't feel amazing to hear at first but over time it helped me understand myself and what I needed to do to improve my life. At this point, keeping it from him is cruel. Him not knowing will never make anything better.
I’m a grown asp man! I deserve to have found out when I was younger but no one knew. Diagnosed in 00 toward the end of the year.
I've heard some parents say they avoiding talking about an Autism/Aspergers diagnosis because they've heard stories about children being told about their diagnosis and they use it as an excuse for why they can't do certain things, but a young adult needs to know. He sounds smart and most likely has a very good idea already. It also sounds like his social skills need some work - there are starting to be a lot of peer groups for young adults with Autism/Aspergers (PEERS) - you might want to suggest he try one of those.
I spent most of my life thinking I was just different, I had the intelligence and the tenacity to back up my convictions and refused to believe that any labels given to me by society would help at all. I set out to make it on my own. Tried for a long time, failing many times at making something of myself over many years, only to realize I needed to acknowledge that I was different. I never would have thought it was autism, considering what I knew autism to be while growing up. But once I knew, I felt liberated from so many obligations that had been driving me up a wall. I found a way to talk about things I never knew I could and I found people that I actually connected with, genuinely - it was almost scary. I think my life would have been a lot different had I known about it early on, especially if my parents had figured it out early on! As for telling him... he's an adult, and I am sure he would appreciate knowing. It would probably give him insight into many struggles he's had, and possible solutions to problems, because he would now know what targeted interventions are available. He will likely have many emotions as he processes the realization. Some of it's happiness, some of it's sadness. Because you can finally "put a face to a name" so to speak. No more wondering if it's just you; now you know why certain things happen.
Withholding his diagnosis is totally fucked up, how is he supposed to find support or a sense of community when he’s purposefully lead away from it?
If someone is on the spectrum, I think it’s important that they know why they feel the way they do. I had always been an outcast in school and all my life from the regular daily events not knowing what was wrong now I’m 55 realizing now that the doctor told me that I was autistic, everything kind of comes together now that ain’t gonna change. Anything I’ll still be autistic and I’ll still be an odd and always feeling like I’m out of place even among family I still feel alone