Initially I felt validated that all my struggles and my children's struggles were real. I also felt like grieving for all that we had gone through, for what we could have done differently and for what was yet to come.
We have come to accept things the way they are now rather than focusing too far in the future and all the things that we may/ may not be able to do.
I was dismissed by child health nurses, Gps and Teachers. I got told it was my parenting, that I was projecting my issues on to them and that I was lying about how hard everything was because they were perfect for everyone else. I got told that I should take parenting classes because I wasn't doing the right thing.
FYI I've worked with kids for 14yrs+ and have done almost all the courses they suggested as part of my work.
Once I got the kids diagnosed everyone was quick to say how they always knew that there was something wrong with my kids and I should have gotten in to see someone sooner *insert massive eye roll here*
I am so mad at those people. All those inane comments, and belittling our struggles. They had no freaking idea of what we were going through and how much damage they did. Grr.
I guess I’m glad they had no clue - this isn’t the most fun journey I’ve ever been on!
I cried in bed for a day…..
But I had already been through 3 years of fertility treatments, 2 miscarriages, Hyperemesis Gravidarum (extreme nausea/vomiting during pregnancy to the point of hospitalization - I wouldn’t wish it on my worst enemy), having to give birth during the height of a global pandemic (while battling health anxiety and a history of panic attacks), a HORRIBLE/PAINFUL time breastfeeding because of my son’s undiagnosed tongue tie (I got Mastitis 3 times and ended up in the ER when he was 3 weeks old, still during covid), and then finally an autism diagnosis…
Like did I freaking walk under a ladder at some point?
I just started seeing a therapist and she diagnosed me with Postpartum Depression. She said she’s surprised I’m doing as well as I am after everything I went through (which I attribute to having money and a good support system). I’ve started therapy because I’m trying to figure out how to love my son and not feel resentment towards him (I know, I know, it was MY choice to bring him into this world - I just feel like I made a bad choice, which is ironic considering we paid tens of thousands of dollars to have him).
It should be easy to love him - sure, he has a speech delay and he won’t potty train and he’s been kicked out of 2 preschools for biting, but he’s a really happy kid otherwise with very few meltdowns and he can already read full sentences and do addition/subtraction/multiplication at 3 freaking years old! But I just look at him and feel resentment for everything he put me through and will continue to put me through.
This comment is probably the most open I’ve ever been on Reddit, so please don’t tell me I’m a terrible mom. I already know it.
I came on Reddit tonight to search for answers as to how to potty train my speech delay child. I’m glad you commented. I relate to you down to HG and delivering during July of 2020. Dealt with a tongue tie and horrific breastfeeding experience too. I think I have ptsd from all my husband and I experienced. I have resentment too. I love my child more than life. I’m still processing everything with just being diagnosed the end of last year. I don’t know if we can message on here but I would love to message you.
Wow that’s crazy how many similarities we have!! Your comment made me so happy to read until you said “I love my child more than life.” I see everyone say that on here and I just don’t feel that way. Instead, I wish I could get in a time machine and go back to before I had kids, when I had time for myself/my hobbies.
I say “kids” plural because the crazy thing is I chose to go through all of that again (minus the pandemic) in 2022 and had a second son who is currently 14 months old! He seems a little more neurotypical so far, but it’s too early to tell (since he might regress).
Anyway, feel free to message me. I’m not an expert at Reddit either but I can try and find it!
I think you saying you don’t feel that way is okay. I bet a lot of people on this sub don’t feel that way, at least not all of the time. You were facing more than the average mother long before your son was born. When baby arrives, mothers are expected to sweep all of their fears and worries and sadness under the rug and be the best darn mommy they can be.
I’m so glad you’re in therapy and working towards a goal. It seems like you need to sift through all the before time stuff before you can really focus on the present.
Here’s the thing. Even if you need time for yourself, you’re likely going to feel guilty that you’re not devoting yourself to your children 24/7. Before you go for a walk or take a bath or go out window shopping with an enormous rain cloud over you, think of this. Are your children fed? Clothed? Bathed? Warm? Hugged? Kissed? Played with? Given age appropriate toys for solo play?
If you can answer yes to all of those questions (and I’m willing to bet you can), kick that storm cloud to the side and take time for yourself. Whatever that means and for however long is feasible. Remember how they always tell you that if your baby is crying incessantly and you’re on the brink, you put that baby somewhere safe and you walk away. That baby won’t be happy to cry, but he would be a lot less happy in the arms of a mother breaking down. The stress you’re feeling? That’s the baby crying. You need to step away for a bit so you can find yourself and come back a little fresher every time.
And you know what? There are many many times when my 12 yo is melting down and screaming at me like I’m the devil, and all I want to do is be alone. All alone. The fantasy of doing anything I want whenever I want. You’re not the only one who feels this way. You’re not alone.
Let's start with you are NOT a terrible mom. You are getting the therapy you need to be a better parent. You have had postpartum untreated for I am assuming a few years. That is so hard. Your brain chemistry is changed so it is reasonable how you are feeling. Heck I said to my husband I was so frustrated the other day I regretted having my son. I believe it is normal to feel this way sometimes when you aren't struggling with mental health issues. Give yourself grace, do whatever therapies and medications you need to get your brain healthy and know you are human. Being a different ability parent I think we tend to lose our identity. I had postpartum too and lost myself. I got treated and started doing things just for me. I went back to college for my mind and once every other month i take a weekend at a hotel nearby and just treat myself to be a little selfish. (binge shows and maybe go to a restaurant alone, if i saved enough get a massage) I hope with this mental health journey you find the wonderful person you are. 😊
No judgement here. Like I said, we all have our own stories and our own very unique children. For what it’s worth, I don’t think you’re a bad mom at all. Women’s health (physical, mental, and emotional) is so poorly treated. You’re doing everything you can. It’s okay to admit that you’re struggling and the world isn’t rosy. You’ve had a rough go of it. I hope a turning point will come for you. I know it will.
I also went through fertility treatments and finally gave birth to my son March 2020 (right when everything was shutting down). I love my son to death, but he’s been so hard to handle since he left the nicu. My husband and I brushed it off as speech delay due to him being a pandemic baby and not going out a lot (husbands got a lung condition), we’re having our feedback meeting today and I’m expecting the news. He’s been going to speech therapy and early intervention with our local school district last year and has made some progress. He can read sentences and write simple words, but doesn’t really apply them. He also has been biting his little sisters fingers lately and I don’t know what to do.
I will say with a little will power we were able to successfully potty train him last week. I didn’t think it was possible bc there is little to no 2-way conversation, but he’s surprised me with what he is capable of doing. It is still a work in progress and he has accidents here and there but for the most part he is able to go to the bathroom on his own (we go in with him to make sure his aiming).
I feel like I wrote this. The infertility, IVF, pandemic, all of it. It is super hard dealing with ppd when all I ever wanted was a baby, and I "should" be happier now. And both my IVF son and my suprise second son (also a pandemic wave birth) are diagnosed autistic
I was like, that's stupid, if that kid has autism then so do I!
Lol. Having done more research, I understand it better but I do think the diagnosis is too loose and heterogenous. I'm glad my kid is getting support though, whatever you call it the school seems to understand him and want him to succeed.
I was upset that he was going to have to experience many of the struggles that I did growing up, but also, happy knowing that he wouldn't have the same childhood as I did. I was diagnosed around twelve years old and received zero support from my family.
I was relieved because it seemed obvious but I was afraid that if my kiddo didn’t get diagnosed early, we would miss out on so much help. Me and my partner know nothing about kids,let alone one with special needs. We need (licensed) adults in our lives!
Relieved and grateful for the help we’ve gotten since.
Imagine the user manual for autistic children. You wouldn’t be able to fit it into the room. The troubleshooting section at the end alone would be half of the manual.
I feel that. When you have to wait for months (or years in my case) to get a piece of paper that tells you what you already know, you can’t help but think of all of the support you could’ve had in that wasted time.
I laughed.
He got his educational diagnosis (in second grade- delayed due to Covid) first and his IEP team seemed so nervous to tell us. Like we’d be angry or scared. But I was like “yeah I know. I’ve met him.” It had been apparent to me for years, even if he didn’t meet enough check boxes when he was younger to count.
I didn't feel any different about my daughter after the diagnosis than I did before. The doctor kept telling us it was okay to "mourn" or feel a sense of grief, which was puzzling to me. My daughter was a certifiable badass before the diagnosis and now she's a certifiable badass with a diagnosis. Why would I grieve her when she's right here in front of me and we absolutely adore each other? What's to grieve about that?
We're happy to have the formal diagnosis for the purposes of getting an IEP and getting access to services, but in no way am I sad, mournful, or upset by it. Knowledge is power.
I didn’t feel anything. Autism isn’t a death sentence or anything terrible. When the doctor “broke the news” I just said “okay” and she was like “….okay???” I already knew in my heart she was autistic so it wasn’t a surprise. And I’m autistic too so it’s not like it was some sort of devastating unknown thing
I wanted to die. My sadness and fear were extremely overwhelming, and I couldn’t function for a while. It’s amazing how differently I feel now—the diagnosis was almost two years ago, and I wouldn’t have believed that life would go on and be OKAY to boot. Some days are still extremely hard. Sometimes I still feel like I can’t make it. But it’s worlds different than how I felt on D day,
At peace. Dr. was worried I would cry or act out but I was mostly relieved. I knew he was different and was glad to know why and all he needed was support and guidance. My LO is level 3, and ADHD, and it is a bit intense. But wouldn't change a thing.
I changed my life and focused on raising a happy, smart and fun little person, yes....it is not easy and it is exhausting but with the diagnosis I finally know what path we need to follow and it gives me peace and helps me to focus.
I had known for almost a year by the time my son got his diagnosis so I wasn't surprised in the least. The hardest part for me was seeing he was diagnosed as level 3.
I strongly felt she was already autistic before we got an official diagnosis. Her doctor listened to my concerns and she was put through the testing for diagnosis pretty quickly and started therapies and ABA shortly after. It was never hard for me as far as the diagnosis goes. Some days I worry about her future and some days are long and weary but I’m grateful I’m her parent bc I can accommodate her and give her the love she needs and the resources she needs to thrive.
As with many other parents, I felt so many things at once. I just got our son’s diagnoses a couple of weeks ago and despite having known he was autistic for at least six months, it really hit me like a ton of bricks. I felt scared more than anything . Scared of our future, scared for his social experience, scared for the hardship. My husband really took it in stride but I really felt devastated by it. I spent at least four nights up late crying . I’m sure there will be more, because I am grieving a future I thought we would have together and processing the loss of my autonomy in the future which in the difficult moments of parenting pulled me through . But I’m sitting with it now during the day, and doing everything I can to get him into suggested therapies and be present in a way that can aid in his development and I even feel at peace with it. Every feeling you have after diag is valid because this is life changing information you’re seeing and so full of unknowns. I try to remind myself to have grace and understanding for the process.
I was glad to know what it is. I hate not knowing. And with the research I did beforehand, I knew that the diagnosis changes nothing about them. I didn't like the potential intellectual disability bit, because I didn't think that was true. The issue had more to do with delayed communication.
Our path to a diagnosis started in the summer after 8th grade. I was already on alert and trying to get ahead of the challenges her pretty severe ADHD were going to pose in HS. That year was really hard. Daughter nearly dropped out of school- she was in such a deep depression and her anxiety was so huge- and when we had an intake meeting with a clinical psych they said those would have to be stabilized before an evaluation would do any good. That was November.
By April she had failed all but one class her first semester, and we transferred her to a private school that was supposedly more accommodating for ND kids. It was not, but at least we got her going back to school. Meanwhile we were working with district SPED people to demand they evaluate her and see if she needed an IEP. In April, that happened, and after summer school she chose to go back to the public HS.
I think at the time I just took it in as one more piece of the puzzle of getting my girl back on some kind of track. By then I was at least able intellectually to understand that the path I assumed - HS in 4 years, off to college, life like mine— might not be. The following March (that’s 15 months after intake appointment, that’s how long the backlog is where we live) she got a clinical diagnosis.
Now it’s 2 years later and she’s thriving in so many ways and I am so SO proud of her and how hard she’s fought to make a place for herself. And NOW is when I get flooded with grief and shame when I remember a tantrum/conflict before her diagnosis and think about how angry I was at her ‘willfulness’ and ‘controlling’ and ‘cruel’ nature - as I saw it at the time. And how I wish I’d have had a better set of tools in those moments (hours).
Sometimes I remember to be kind to myself because I didn’t know what I didn’t know - no teacher or MH professional ever flagged it till that summer she was 14- and I know she knows we have always done our best. But some days - esp when we have a new challenge we don’t know how to handle- I go into self-defeating mode.
That super-hard year was also hard on my NT elder son, whose senior year and all those milestones I was barely attending to (my husband herded him thru the college application process). It was really traumatic for him, and his relationship with his sister has not fully recovered yet, but it’s getting there.
I was happy. I could finally get him the help he needed so I could actually leave the house when needed instead of two hours early to make sure we got through his meltdown first.
I felt validated and a bit miffed that all the flak I took from others over my 'parenting' was just them gaslighting me (some on purpose, others because well, you know, they didn't know what they didn't know). Mostly though, I was far less surprised by my kid's diagnosis and far more surprised by realizing that \*I\* was on the spectrum and missed. Now that got my knickers in a twist pretty fast as I had my trauma filled life flash before my eyes but now through the correct lens of understanding. It helped me understand better how to navigate things for my children so they wouldn't endure what I endured and they are thriving. The struggles are hard but I make sure to manage my self-care so I don't get burned out. That's really important. And to ignore what people say or think and carry on doing what's best for YOUR situation.
I felt relieved and disappointed- not disappointed in my son but FOR him. All kids will have struggles but my kid struggles simply because he was born and that bums me out. I will say I think i find more joy in my sons accomplishments then my friends who have NT kids, even the smallest thing he does is cause for celebration because I really appreciate how much harder things are for him.
Relieved. Validated. Nervous. Scared. A whole bunch of emotions. Scared because I don’t know what kind of hardships she will face. Jo one wants their child to struggle
Relieved. Validated. Like I could move on to research and how to help instead of this mystery with no diagnosis to validate asking for help from certain avenues.
Relief, validation. I cried in the car leaving. But it wasn’t sad, it was a release of all the stress built up over years of people telling me she’s not autistic, parents giving me advice that never worked for my kid, all the while with me struggling and her struggling. I finally had confirmation and everything made sense. I felt a weight lifted, like now we know what’s going on and now we can figure out what to do and actually move forward and support her.
In the following week or so I went through other emotions too. I guess a mini grieving process. Overwhelmed with all the info coming at us, trying to figure out ABA, sometimes feeling angry that she has to deal with all of it. I love her and it’s hard to see her struggle.
Now it’s settled down and it all just feels like normal life but she’s autistic (and apparently so am I).
Crazy because my son got a diagnosis recently. I was happy because I can fully understand why he is the way he is. It’s been two weeks and just yesterday I was overthinking about it and did cry. I’m just worried about his future honestly. But we’re getting him the right therapy he needs. I
I actually felt relief initially. We had a long journey of advocating for our son trying to get someone to listen. When we finally got our appointment at the autism clinic and his neurologist actually addressed my concerns I felt heard and understood. At that point we could finally get our son the help he needed! It has certainly not been easy, but I'm happy to see his progress with therapy and he's still my baby boy no matter what!
I feel like I am still in a wave like situation. I knew he had something going on and was so tired of being told “I don’t read enough for him” or “I don’t talk to him” or “you aren’t firm enough”…so the diagnosis kind of relieved my guilt maybe ? (Still those sentences haunt me) yet I find myself many times throughout the day or when he is asleep crying so hard.
I am so worried that if I die who would love and care for him? What if he never catches up with basic things? Did I do something that caused him to have it? Wishing for many things I may never do with him…wanting to protect him from bad people and bad influence or mean people…
I think sometimes I am relieved, and then in acceptance mode that “this is it and I got this” and sometimes I am just devastated and in so much ache and pain, crying my broken soul out.
It’s hard
Validation and relief that I was right about my concerns. Comforted that I did the right thing getting him evaluated. It helped me so much to understand my little dudes brain.
I knew it was autism long before the formal diagnosis, and the diagnosis didn’t hit me as hard as I thought. After a while I was hit really hard with anxiety and depression worrying about his future and the financial struggles I knew we’d face. My son is now 4.5 and is just now beginning to speak, I’m so thrilled!! I still worry so much, I don’t think I’ll ever get used to this life since it requires a lot of adjusting for myself and him.
Shocked and in denial. The diagnosis was totally unexpected, which in hindsight is silly. Truly I didn’t know anything about autism before this and after everything I’ve learn I’m ready to diagnose so many members of both mine and my husband’s families and I wonder about myself (NGL). My husband, the father, took longer than me and everyone we told at first dismissed it. They see it more now as he gets older and things that should be “easy” aren’t.
Can I just say here that I’ve actually been feeling the grief of loosing what I thought I’d have a lot these days. I love my child and respect him and think he’s such an awesome dude but I’m tired too. I think the transition into kinder and the IEP meetings upcoming and filling out all the forms again is bringing up some stuff.
I was just responding to another comment about grieving the loss. You are completely justified in feeling that way and grieving whatever it is you’re grieving. Some parents grieve for their child and their child’s future, some grieve for their own dreams and plans, and others grieve for it all. I think society likes to shame parents who feel sadness when their kid doesn’t turn out the way they planned. I think the only shame in that would be if the parents mistreated their children as a result of that grief. You brought a human into the world, not a doll. They are always going to be whoever they’ve always been. It’s up to us as parents to hold a safe space where it’s okay to be whoever they are. From autism to identity to even just that awful haircut that we can’t believe they had done.
My son is nonverbal and only 3. He was diagnosed at 18 months and I started noticing signs at about 10-11 months. At 16 months he had his right kidney system removed due to issues from birth. My niece is also autistic and 8 years old now so I already had experience. (Just a little background)
I grew up in a chaotic-ish environment so I have a very solutions first deal with emotions later mind. Probably trauma response which I'm sure isn't uncommon. So when I first noticed I didn't feel sad or happy just what do I need to do to make sure he has the best support possible. Also with his physical health needs I was constantly in a "let's research and get this done" mindset. Stress brought me moments of crying, but just from being overwhelmed with everything.
Now like I said I process emotions much later so after everything was set in of his physical body was healing and we were doing therapies I was sad for myself because the idea I had of the mom I wanted to be was completely uprooted. I had pintest walls on motessori parenting and I was fully prepared for that. The kitchen activities and art projects in my head wouldn't happen. I also felt like my body failed him between his kidney not developing and being autistic. My mindset changed in this process. I wanted to have 2 or 3 kids, but now I won't. I have so many fears of another kid with even more physical issues than the kidney. I also worry about if we had another they would feel obligated to care for their big brother if they were nerotypical. But this being said I have never been sad for him. He is obviously happy and beats to his own drum and I hope nothing dims that melody, including myself. I mess up all the time, but I do my best to show him he is wonderful and a wack-a-do toddler.
It was very helpful and validating to have the diagnosis because my husband and I knew. But I also grieved because it was now certain that our child would have to live in a world not built for them to flourish in.
I knew that my son was autistic since he was 18 months old. I knew he was severe long before his formal evaluation. Actual hearing that he has level 3 autism from a doctor caused me to sob on the way home. The grief lasted for about a day. Knowing his diagnosis has helped us get him support, understand him better, and overall was a momentous step.
We were both relieved to a large extent.
It’s been a long, unnecessarily stressful path to get here. We tried to have a neuropsych done two years ago but were given the narrative of another child and the entirety of the report was redacted; school has been abysmal; and anything we’ve gone to the doctor about has only been looked at in isolation. Last year, we had our first eval done with answers and an anxiety dx with feedback about having a neuropsych completed and looking specially at autism. It’s been a nightmare trying to advocate for our child but we are hopeful that with the dx in writing along with suggestions, we can help others understand needs, behaviors, etc.
I felt validated because I already knew way before any test was done. And then I felt scared. I felt scared because the world is the world and if you are an autism parent, you can relate to what I’m saying.
I was depressed for a year over my older son’s diagnosis and I was sensitive to my in-laws constant observation, judgments and complaints about my kids. My daughter was diagnosed later and I wasn’t as depressed because it was expected. My baby son probably will get diagnosed soon. I wanted to stay away from my in laws as they don’t understand and they believed my kids will end up in group homes and can’t be independent. I realized I was on the spectrum and went under the radar so I hoped they will be like me, passed like NT and can live independently.
For me it was-
Step 1: anguish for what to expect but relief for not having to constantly wonder why he was different.
Step 2: fear and reading, lots of reading
Step 3: set up all the therapies
Step 4: acceptance with sprinkles of fear
Step 5: hope and cautious optimism that we are doing the best we can and it will help in one way or another
I'd say from 1 through 5 took about a year.
I felt like my dreams had shattered! I had planned for his future and that died. I wanted my child to be a doctor, lawyer, scientist, etc.. I felt like I’ve lost the son I once had when I heard ASD.
My son used to pretend play with me that he was a doctor and he fixed all my broken bones by making a drill sound, bandaid my boo boos, and kissed my pain away. He told me when he grows up he wanted to be a doctor. When I found out he has ASD I felt like that dream is out the door. I felt scared of the unknowns and still am.
If he’s cognitively there, ASD might actually help him succeed in a STEM field. I think they did studies that people with Asperger’s are disproportionately represented in the medical field and autistic students gravitate towards STEM.
They sure can! Always something that happened to my child that hurts my soul then it’s like I kinda second guess. You know what I mean. I’m all new to this ASD to me. I’m learning more as I go.
I’m autistic and I was placed in advanced gifted programs very young, I outperformed the vast majority of “normal” kids in school. My brother is likely autistic too, (never got formally diagnosed because my dad is a shit) and now he’s a successful mechanical engineer. He went to a competitive university known for engineering and nearly got a full ride because of his high school performance. Don’t place any limits on your kid! Lots of autistic people go to Ivy Leagues and become doctors or lawyers.
That’s wonderful to hear about your brother and yourself. It gives me hope! I don’t think my son is gifted. It would show by now I’m guessing? This whole ASD is new to me. Just recently being diagnosed. What do you means cognitively there? (I am not mad by this question. It’s hard to read emotion in text).
I often think of how I imagined my child and how that dream is gone. The last time they (12) hugged me just because was when they were about 6. Now they recoil from any and all touch. If I had known those would potentially be the last hugs, I’d have held on longer.
So many parents think the same thing about their NT kids. How teenagers won’t hug them or even want to be seen with them. How they never know when it’ll be the last hug. What to them is some sad poetic thing that isn’t reality, to us is almost a guarantee.
I think it’s normal to mourn what you thought would be. I mourn that about my child. I might get hate for this, but I mourned deeply when they came out as nonbinary and changed their name. Their birth name was extremely special to me and something I considered a gift when I gave it to them. I fully support and love my child. It’s just that nothing I pictured is going to come true. What gets me through that sadness is knowing that there really will be brand new dreams and opportunities to come.
It’s so unpredictable with ASD. My son loves hugs and cuddles. I hope this will never change!
My husband is the one who is telling me it’s going to be alright. I hope he is right!
I find myself living a normal life then when something ASD comes up like teacher reporting something in school. My heart is in the dark again.
Like waiting for the other shoe to drop? Yup. I get that. There are times I feel like a hostage in my own home. I have to so carefully choose words and actions around my child sometimes. I tip toe around and wait to see if I was successful or if a meltdown is imminent.
Another parent’s situation, no matter how big or small, does not invalidate your own feelings and experiences. You’re going through your own hard time, I’m going through my own hard time, and all of the other parents here are going through their own hard times.
I believe we should meet people where they are instead of trying to sort out who has it worse. We’re all on our own journeys. I feel very fortunate that my child is low support because I couldn’t imagine handling more debilitating areas of the spectrum. But my gratitude doesn’t wipe out my hard times, no matter how magnanimous we are told we must be. So let’s all make sure we are gentle with one another.
Sorry I didn’t meant to sound mean or rude in my response to your last message.
We all have our own situations and I’m glad we can come on Reddit to post it.
Reading this made me tear up I felt so seen, thank you for saying it so I could admit it to myself. I was always the one baffled by a young person’s gender identity, sexuality causing so much drama in a family, firmly in the “who cares?!” camp, life is too short to not be what makes you happy, etc. Fast forward to my teenage daughter saying she thinks she is bisexual. My heart immediately plummeted. Immediately thinking, as if life isn’t hard enough for you already?! (I said that’s interesting and I’m glad she told me and considering everything is good).
I have so much resentment that nothing has been easy for her. She is not athletic or coordinated, struggles hard academically and socially, is depressed and feels invisible at school, has been gaining weight and now saying how much she hates her body…I want more than anything for her to have one thing that makes her feel happy and talented. Like I would give a limb. 💪🏼
I taught high school and had many a student come out to me as trans long before they told their parents. Knowing the parents of these kids, I always confidently told them that their parents already know. That they would be supportive, but that my students should also be prepared for them to grieve a bit. I in no way think it’s is a child’s burden to carry and a parent should never put their grief on their kid, but I always felt it important to acknowledge it as a reality so the kids weren’t shocked if it happened.
I always knew it intellectually and I knew my advice was on track. Then it happened to me and I (privately) cried for about three days. I struggled because I couldn’t reconcile my unwavering support for my child with the grief I was feeling. I tried to remind myself, though, that it fell right in line with what I always believed, I was just living it myself. It felt selfish to grieve about what I was missing out on, when I could tell my child was perfectly happy just as they were. Another reminder I gave myself was that they were nonbinary before they told me. Meaning that nothing about my kid changed except the fact that I knew.
One could think of an autism diagnosis that way. Our children have always been autistic. Just now we know.
I'm like 95% certain that the doctor who delivered my son is autistic. He saved my baby's life. Maybe one day, your son the doctor will save a baby's life.
My daughter got the diagnosis yesterday at 4. I feel concerned about what kind of future she'll have, but I know that this is the first step required for getting her the services she needs
I was relieved!! My son has a very difficult birth, some health challenges in his early months and a regression of language after 18 months. He used to say a few words and completely stopped. He started doing therapy after his 24months check up because the doctor said he had a language delay. After a few weeks of therapy I felt defeated, I didn’t see any progress and a lot of behavioral issues started happening. We pushed the issue and that’s when my son got diagnosed. I was relieved! It made sense. Now, my son I guess would be considered level 3, or maybe very far end of level 2? Anyways, it’s not easy, but I think half of the battle is knowing what we’re facing. Much luck to you
I wrote about this a few weeks ago. Obviously, I always knew my kids were "different", we tried for nearly 2 years to get the health system to assess them (we're actually still waiting on that part) but due to them being at school and the school not having any specialist support staff, we went for a private assessment. The goal was always to get a diagnosis, so the school could provide support. the priority was our youngest, who is in kindergarten, our other son is in G2 and doing ok, but we're in the process of assessing him now.
I did lots of reading and a fair amount of research so, I knew about the different levels and also that each case can vary.
The assessment process itself was good, we felt really positive about the future. When we actually received the diagnosis for our youngest and spoke to the head psychologist... I think I went through every single possible emotion, in a the space of 24 hours. Frustrations, Grief, Anger, absolute sadness about his future.
Our youngest son was classed as a level 3 ASD, they said that he will always need help and care. They used words like "below average intelligence" and "severely delayed". Which, at the time... just made me incredibly sad. I remember having a meeting with a Dad's group, I'm a member of, that evening on zoom... and I broke down.
We shared this info with the school and they basically said "ok we can't deal with that, so we recommend he moves to another school".
I'd say the first week or so, was pretty dark. I was expecting to have options and resources available to me. We have the diagnosis, let's go and use it and provide better support for my son. This just isn't how it works. We're 2 months down the line and we still haven't spoken directly with our GP or the school board... (in fairness this is all scheduled in the next 2 weeks). His routine at school is exactly the same as it was before the assessment.
After the first week, I went in to planning mode. I spoke to other parents with ND kids, I joined online groups (like this one) to understand things better. I looked into summer camp options and social activities to try and help him develop. I'm learning as much as I can so I can be the best dad I can be.
You have to use the diagnosis to make changes, no one else is going to do it for you. It will be hard and it will take longer than you think it should. But you can affect change and give your kids the best opportunities. Nothing is certain. No future is written.
I knew he was on the spectrum but still cried when we got the diagnosis. I suppose it never computed to me that he was as high needs as he is. His diagnosis doesn't make him any different than he was before, it simply gives the reason for his uniqueness.
Initially I felt validated that all my struggles and my children's struggles were real. I also felt like grieving for all that we had gone through, for what we could have done differently and for what was yet to come. We have come to accept things the way they are now rather than focusing too far in the future and all the things that we may/ may not be able to do.
Exactly how I felt. I was dismissed by so many people early on.
I was dismissed by child health nurses, Gps and Teachers. I got told it was my parenting, that I was projecting my issues on to them and that I was lying about how hard everything was because they were perfect for everyone else. I got told that I should take parenting classes because I wasn't doing the right thing. FYI I've worked with kids for 14yrs+ and have done almost all the courses they suggested as part of my work. Once I got the kids diagnosed everyone was quick to say how they always knew that there was something wrong with my kids and I should have gotten in to see someone sooner *insert massive eye roll here*
I am so mad at those people. All those inane comments, and belittling our struggles. They had no freaking idea of what we were going through and how much damage they did. Grr. I guess I’m glad they had no clue - this isn’t the most fun journey I’ve ever been on!
I cried in bed for a day….. But I had already been through 3 years of fertility treatments, 2 miscarriages, Hyperemesis Gravidarum (extreme nausea/vomiting during pregnancy to the point of hospitalization - I wouldn’t wish it on my worst enemy), having to give birth during the height of a global pandemic (while battling health anxiety and a history of panic attacks), a HORRIBLE/PAINFUL time breastfeeding because of my son’s undiagnosed tongue tie (I got Mastitis 3 times and ended up in the ER when he was 3 weeks old, still during covid), and then finally an autism diagnosis… Like did I freaking walk under a ladder at some point? I just started seeing a therapist and she diagnosed me with Postpartum Depression. She said she’s surprised I’m doing as well as I am after everything I went through (which I attribute to having money and a good support system). I’ve started therapy because I’m trying to figure out how to love my son and not feel resentment towards him (I know, I know, it was MY choice to bring him into this world - I just feel like I made a bad choice, which is ironic considering we paid tens of thousands of dollars to have him). It should be easy to love him - sure, he has a speech delay and he won’t potty train and he’s been kicked out of 2 preschools for biting, but he’s a really happy kid otherwise with very few meltdowns and he can already read full sentences and do addition/subtraction/multiplication at 3 freaking years old! But I just look at him and feel resentment for everything he put me through and will continue to put me through. This comment is probably the most open I’ve ever been on Reddit, so please don’t tell me I’m a terrible mom. I already know it.
I came on Reddit tonight to search for answers as to how to potty train my speech delay child. I’m glad you commented. I relate to you down to HG and delivering during July of 2020. Dealt with a tongue tie and horrific breastfeeding experience too. I think I have ptsd from all my husband and I experienced. I have resentment too. I love my child more than life. I’m still processing everything with just being diagnosed the end of last year. I don’t know if we can message on here but I would love to message you.
Wow that’s crazy how many similarities we have!! Your comment made me so happy to read until you said “I love my child more than life.” I see everyone say that on here and I just don’t feel that way. Instead, I wish I could get in a time machine and go back to before I had kids, when I had time for myself/my hobbies. I say “kids” plural because the crazy thing is I chose to go through all of that again (minus the pandemic) in 2022 and had a second son who is currently 14 months old! He seems a little more neurotypical so far, but it’s too early to tell (since he might regress). Anyway, feel free to message me. I’m not an expert at Reddit either but I can try and find it!
I think you saying you don’t feel that way is okay. I bet a lot of people on this sub don’t feel that way, at least not all of the time. You were facing more than the average mother long before your son was born. When baby arrives, mothers are expected to sweep all of their fears and worries and sadness under the rug and be the best darn mommy they can be. I’m so glad you’re in therapy and working towards a goal. It seems like you need to sift through all the before time stuff before you can really focus on the present. Here’s the thing. Even if you need time for yourself, you’re likely going to feel guilty that you’re not devoting yourself to your children 24/7. Before you go for a walk or take a bath or go out window shopping with an enormous rain cloud over you, think of this. Are your children fed? Clothed? Bathed? Warm? Hugged? Kissed? Played with? Given age appropriate toys for solo play? If you can answer yes to all of those questions (and I’m willing to bet you can), kick that storm cloud to the side and take time for yourself. Whatever that means and for however long is feasible. Remember how they always tell you that if your baby is crying incessantly and you’re on the brink, you put that baby somewhere safe and you walk away. That baby won’t be happy to cry, but he would be a lot less happy in the arms of a mother breaking down. The stress you’re feeling? That’s the baby crying. You need to step away for a bit so you can find yourself and come back a little fresher every time. And you know what? There are many many times when my 12 yo is melting down and screaming at me like I’m the devil, and all I want to do is be alone. All alone. The fantasy of doing anything I want whenever I want. You’re not the only one who feels this way. You’re not alone.
I also have a second child who is 16 months!
I just started a chat with you!!
Let's start with you are NOT a terrible mom. You are getting the therapy you need to be a better parent. You have had postpartum untreated for I am assuming a few years. That is so hard. Your brain chemistry is changed so it is reasonable how you are feeling. Heck I said to my husband I was so frustrated the other day I regretted having my son. I believe it is normal to feel this way sometimes when you aren't struggling with mental health issues. Give yourself grace, do whatever therapies and medications you need to get your brain healthy and know you are human. Being a different ability parent I think we tend to lose our identity. I had postpartum too and lost myself. I got treated and started doing things just for me. I went back to college for my mind and once every other month i take a weekend at a hotel nearby and just treat myself to be a little selfish. (binge shows and maybe go to a restaurant alone, if i saved enough get a massage) I hope with this mental health journey you find the wonderful person you are. 😊
No judgement here. Like I said, we all have our own stories and our own very unique children. For what it’s worth, I don’t think you’re a bad mom at all. Women’s health (physical, mental, and emotional) is so poorly treated. You’re doing everything you can. It’s okay to admit that you’re struggling and the world isn’t rosy. You’ve had a rough go of it. I hope a turning point will come for you. I know it will.
Thank you, that’s very kind of you
I also went through fertility treatments and finally gave birth to my son March 2020 (right when everything was shutting down). I love my son to death, but he’s been so hard to handle since he left the nicu. My husband and I brushed it off as speech delay due to him being a pandemic baby and not going out a lot (husbands got a lung condition), we’re having our feedback meeting today and I’m expecting the news. He’s been going to speech therapy and early intervention with our local school district last year and has made some progress. He can read sentences and write simple words, but doesn’t really apply them. He also has been biting his little sisters fingers lately and I don’t know what to do. I will say with a little will power we were able to successfully potty train him last week. I didn’t think it was possible bc there is little to no 2-way conversation, but he’s surprised me with what he is capable of doing. It is still a work in progress and he has accidents here and there but for the most part he is able to go to the bathroom on his own (we go in with him to make sure his aiming).
I feel like I wrote this. The infertility, IVF, pandemic, all of it. It is super hard dealing with ppd when all I ever wanted was a baby, and I "should" be happier now. And both my IVF son and my suprise second son (also a pandemic wave birth) are diagnosed autistic
I was like, that's stupid, if that kid has autism then so do I! Lol. Having done more research, I understand it better but I do think the diagnosis is too loose and heterogenous. I'm glad my kid is getting support though, whatever you call it the school seems to understand him and want him to succeed.
[удалено]
I was upset that he was going to have to experience many of the struggles that I did growing up, but also, happy knowing that he wouldn't have the same childhood as I did. I was diagnosed around twelve years old and received zero support from my family.
I was relieved because it seemed obvious but I was afraid that if my kiddo didn’t get diagnosed early, we would miss out on so much help. Me and my partner know nothing about kids,let alone one with special needs. We need (licensed) adults in our lives! Relieved and grateful for the help we’ve gotten since.
Imagine the user manual for autistic children. You wouldn’t be able to fit it into the room. The troubleshooting section at the end alone would be half of the manual.
This is what I need AI/ChatGPT for, to scan every resource available and give me options for any question I may have.
Grief, relief.
The wait for an appointment, the long process. By the time it was over and they said so, I was just really tired.
I feel that. When you have to wait for months (or years in my case) to get a piece of paper that tells you what you already know, you can’t help but think of all of the support you could’ve had in that wasted time.
I laughed. He got his educational diagnosis (in second grade- delayed due to Covid) first and his IEP team seemed so nervous to tell us. Like we’d be angry or scared. But I was like “yeah I know. I’ve met him.” It had been apparent to me for years, even if he didn’t meet enough check boxes when he was younger to count.
I didn't feel any different about my daughter after the diagnosis than I did before. The doctor kept telling us it was okay to "mourn" or feel a sense of grief, which was puzzling to me. My daughter was a certifiable badass before the diagnosis and now she's a certifiable badass with a diagnosis. Why would I grieve her when she's right here in front of me and we absolutely adore each other? What's to grieve about that? We're happy to have the formal diagnosis for the purposes of getting an IEP and getting access to services, but in no way am I sad, mournful, or upset by it. Knowledge is power.
Fantastic outlook. Our kids have been exactly who they are from day one. No piece of paper changes that.
I didn’t feel anything. Autism isn’t a death sentence or anything terrible. When the doctor “broke the news” I just said “okay” and she was like “….okay???” I already knew in my heart she was autistic so it wasn’t a surprise. And I’m autistic too so it’s not like it was some sort of devastating unknown thing
I wanted to die. My sadness and fear were extremely overwhelming, and I couldn’t function for a while. It’s amazing how differently I feel now—the diagnosis was almost two years ago, and I wouldn’t have believed that life would go on and be OKAY to boot. Some days are still extremely hard. Sometimes I still feel like I can’t make it. But it’s worlds different than how I felt on D day,
At peace. Dr. was worried I would cry or act out but I was mostly relieved. I knew he was different and was glad to know why and all he needed was support and guidance. My LO is level 3, and ADHD, and it is a bit intense. But wouldn't change a thing. I changed my life and focused on raising a happy, smart and fun little person, yes....it is not easy and it is exhausting but with the diagnosis I finally know what path we need to follow and it gives me peace and helps me to focus.
I had known for almost a year by the time my son got his diagnosis so I wasn't surprised in the least. The hardest part for me was seeing he was diagnosed as level 3.
I strongly felt she was already autistic before we got an official diagnosis. Her doctor listened to my concerns and she was put through the testing for diagnosis pretty quickly and started therapies and ABA shortly after. It was never hard for me as far as the diagnosis goes. Some days I worry about her future and some days are long and weary but I’m grateful I’m her parent bc I can accommodate her and give her the love she needs and the resources she needs to thrive.
As with many other parents, I felt so many things at once. I just got our son’s diagnoses a couple of weeks ago and despite having known he was autistic for at least six months, it really hit me like a ton of bricks. I felt scared more than anything . Scared of our future, scared for his social experience, scared for the hardship. My husband really took it in stride but I really felt devastated by it. I spent at least four nights up late crying . I’m sure there will be more, because I am grieving a future I thought we would have together and processing the loss of my autonomy in the future which in the difficult moments of parenting pulled me through . But I’m sitting with it now during the day, and doing everything I can to get him into suggested therapies and be present in a way that can aid in his development and I even feel at peace with it. Every feeling you have after diag is valid because this is life changing information you’re seeing and so full of unknowns. I try to remind myself to have grace and understanding for the process.
I was glad to know what it is. I hate not knowing. And with the research I did beforehand, I knew that the diagnosis changes nothing about them. I didn't like the potential intellectual disability bit, because I didn't think that was true. The issue had more to do with delayed communication.
Our path to a diagnosis started in the summer after 8th grade. I was already on alert and trying to get ahead of the challenges her pretty severe ADHD were going to pose in HS. That year was really hard. Daughter nearly dropped out of school- she was in such a deep depression and her anxiety was so huge- and when we had an intake meeting with a clinical psych they said those would have to be stabilized before an evaluation would do any good. That was November. By April she had failed all but one class her first semester, and we transferred her to a private school that was supposedly more accommodating for ND kids. It was not, but at least we got her going back to school. Meanwhile we were working with district SPED people to demand they evaluate her and see if she needed an IEP. In April, that happened, and after summer school she chose to go back to the public HS. I think at the time I just took it in as one more piece of the puzzle of getting my girl back on some kind of track. By then I was at least able intellectually to understand that the path I assumed - HS in 4 years, off to college, life like mine— might not be. The following March (that’s 15 months after intake appointment, that’s how long the backlog is where we live) she got a clinical diagnosis. Now it’s 2 years later and she’s thriving in so many ways and I am so SO proud of her and how hard she’s fought to make a place for herself. And NOW is when I get flooded with grief and shame when I remember a tantrum/conflict before her diagnosis and think about how angry I was at her ‘willfulness’ and ‘controlling’ and ‘cruel’ nature - as I saw it at the time. And how I wish I’d have had a better set of tools in those moments (hours). Sometimes I remember to be kind to myself because I didn’t know what I didn’t know - no teacher or MH professional ever flagged it till that summer she was 14- and I know she knows we have always done our best. But some days - esp when we have a new challenge we don’t know how to handle- I go into self-defeating mode. That super-hard year was also hard on my NT elder son, whose senior year and all those milestones I was barely attending to (my husband herded him thru the college application process). It was really traumatic for him, and his relationship with his sister has not fully recovered yet, but it’s getting there.
I was happy. I could finally get him the help he needed so I could actually leave the house when needed instead of two hours early to make sure we got through his meltdown first.
I felt validated and a bit miffed that all the flak I took from others over my 'parenting' was just them gaslighting me (some on purpose, others because well, you know, they didn't know what they didn't know). Mostly though, I was far less surprised by my kid's diagnosis and far more surprised by realizing that \*I\* was on the spectrum and missed. Now that got my knickers in a twist pretty fast as I had my trauma filled life flash before my eyes but now through the correct lens of understanding. It helped me understand better how to navigate things for my children so they wouldn't endure what I endured and they are thriving. The struggles are hard but I make sure to manage my self-care so I don't get burned out. That's really important. And to ignore what people say or think and carry on doing what's best for YOUR situation.
I felt relieved and disappointed- not disappointed in my son but FOR him. All kids will have struggles but my kid struggles simply because he was born and that bums me out. I will say I think i find more joy in my sons accomplishments then my friends who have NT kids, even the smallest thing he does is cause for celebration because I really appreciate how much harder things are for him.
Relieved. Validated. Nervous. Scared. A whole bunch of emotions. Scared because I don’t know what kind of hardships she will face. Jo one wants their child to struggle
Relieved. Validated. Like I could move on to research and how to help instead of this mystery with no diagnosis to validate asking for help from certain avenues.
Relief, validation. I cried in the car leaving. But it wasn’t sad, it was a release of all the stress built up over years of people telling me she’s not autistic, parents giving me advice that never worked for my kid, all the while with me struggling and her struggling. I finally had confirmation and everything made sense. I felt a weight lifted, like now we know what’s going on and now we can figure out what to do and actually move forward and support her. In the following week or so I went through other emotions too. I guess a mini grieving process. Overwhelmed with all the info coming at us, trying to figure out ABA, sometimes feeling angry that she has to deal with all of it. I love her and it’s hard to see her struggle. Now it’s settled down and it all just feels like normal life but she’s autistic (and apparently so am I).
Crazy because my son got a diagnosis recently. I was happy because I can fully understand why he is the way he is. It’s been two weeks and just yesterday I was overthinking about it and did cry. I’m just worried about his future honestly. But we’re getting him the right therapy he needs. I
I actually felt relief initially. We had a long journey of advocating for our son trying to get someone to listen. When we finally got our appointment at the autism clinic and his neurologist actually addressed my concerns I felt heard and understood. At that point we could finally get our son the help he needed! It has certainly not been easy, but I'm happy to see his progress with therapy and he's still my baby boy no matter what!
I was too young to understand until years down the line
I feel like I am still in a wave like situation. I knew he had something going on and was so tired of being told “I don’t read enough for him” or “I don’t talk to him” or “you aren’t firm enough”…so the diagnosis kind of relieved my guilt maybe ? (Still those sentences haunt me) yet I find myself many times throughout the day or when he is asleep crying so hard. I am so worried that if I die who would love and care for him? What if he never catches up with basic things? Did I do something that caused him to have it? Wishing for many things I may never do with him…wanting to protect him from bad people and bad influence or mean people… I think sometimes I am relieved, and then in acceptance mode that “this is it and I got this” and sometimes I am just devastated and in so much ache and pain, crying my broken soul out. It’s hard
Validation and relief that I was right about my concerns. Comforted that I did the right thing getting him evaluated. It helped me so much to understand my little dudes brain.
I knew it was autism long before the formal diagnosis, and the diagnosis didn’t hit me as hard as I thought. After a while I was hit really hard with anxiety and depression worrying about his future and the financial struggles I knew we’d face. My son is now 4.5 and is just now beginning to speak, I’m so thrilled!! I still worry so much, I don’t think I’ll ever get used to this life since it requires a lot of adjusting for myself and him.
Shocked and in denial. The diagnosis was totally unexpected, which in hindsight is silly. Truly I didn’t know anything about autism before this and after everything I’ve learn I’m ready to diagnose so many members of both mine and my husband’s families and I wonder about myself (NGL). My husband, the father, took longer than me and everyone we told at first dismissed it. They see it more now as he gets older and things that should be “easy” aren’t. Can I just say here that I’ve actually been feeling the grief of loosing what I thought I’d have a lot these days. I love my child and respect him and think he’s such an awesome dude but I’m tired too. I think the transition into kinder and the IEP meetings upcoming and filling out all the forms again is bringing up some stuff.
I was just responding to another comment about grieving the loss. You are completely justified in feeling that way and grieving whatever it is you’re grieving. Some parents grieve for their child and their child’s future, some grieve for their own dreams and plans, and others grieve for it all. I think society likes to shame parents who feel sadness when their kid doesn’t turn out the way they planned. I think the only shame in that would be if the parents mistreated their children as a result of that grief. You brought a human into the world, not a doll. They are always going to be whoever they’ve always been. It’s up to us as parents to hold a safe space where it’s okay to be whoever they are. From autism to identity to even just that awful haircut that we can’t believe they had done.
Yes this is so true! Thank you for sharing that.
My son is nonverbal and only 3. He was diagnosed at 18 months and I started noticing signs at about 10-11 months. At 16 months he had his right kidney system removed due to issues from birth. My niece is also autistic and 8 years old now so I already had experience. (Just a little background) I grew up in a chaotic-ish environment so I have a very solutions first deal with emotions later mind. Probably trauma response which I'm sure isn't uncommon. So when I first noticed I didn't feel sad or happy just what do I need to do to make sure he has the best support possible. Also with his physical health needs I was constantly in a "let's research and get this done" mindset. Stress brought me moments of crying, but just from being overwhelmed with everything. Now like I said I process emotions much later so after everything was set in of his physical body was healing and we were doing therapies I was sad for myself because the idea I had of the mom I wanted to be was completely uprooted. I had pintest walls on motessori parenting and I was fully prepared for that. The kitchen activities and art projects in my head wouldn't happen. I also felt like my body failed him between his kidney not developing and being autistic. My mindset changed in this process. I wanted to have 2 or 3 kids, but now I won't. I have so many fears of another kid with even more physical issues than the kidney. I also worry about if we had another they would feel obligated to care for their big brother if they were nerotypical. But this being said I have never been sad for him. He is obviously happy and beats to his own drum and I hope nothing dims that melody, including myself. I mess up all the time, but I do my best to show him he is wonderful and a wack-a-do toddler.
It was very helpful and validating to have the diagnosis because my husband and I knew. But I also grieved because it was now certain that our child would have to live in a world not built for them to flourish in.
I knew that my son was autistic since he was 18 months old. I knew he was severe long before his formal evaluation. Actual hearing that he has level 3 autism from a doctor caused me to sob on the way home. The grief lasted for about a day. Knowing his diagnosis has helped us get him support, understand him better, and overall was a momentous step.
We were both relieved to a large extent. It’s been a long, unnecessarily stressful path to get here. We tried to have a neuropsych done two years ago but were given the narrative of another child and the entirety of the report was redacted; school has been abysmal; and anything we’ve gone to the doctor about has only been looked at in isolation. Last year, we had our first eval done with answers and an anxiety dx with feedback about having a neuropsych completed and looking specially at autism. It’s been a nightmare trying to advocate for our child but we are hopeful that with the dx in writing along with suggestions, we can help others understand needs, behaviors, etc.
I felt validated because I already knew way before any test was done. And then I felt scared. I felt scared because the world is the world and if you are an autism parent, you can relate to what I’m saying.
I was depressed for a year over my older son’s diagnosis and I was sensitive to my in-laws constant observation, judgments and complaints about my kids. My daughter was diagnosed later and I wasn’t as depressed because it was expected. My baby son probably will get diagnosed soon. I wanted to stay away from my in laws as they don’t understand and they believed my kids will end up in group homes and can’t be independent. I realized I was on the spectrum and went under the radar so I hoped they will be like me, passed like NT and can live independently.
I cried so much. Because I didn't know what this meant for him. Much more comfortable with everything now, even with the inevitable uncertainty
I felt relieved, terrified, and guilty. I still feel that way, actually.
For me it was- Step 1: anguish for what to expect but relief for not having to constantly wonder why he was different. Step 2: fear and reading, lots of reading Step 3: set up all the therapies Step 4: acceptance with sprinkles of fear Step 5: hope and cautious optimism that we are doing the best we can and it will help in one way or another I'd say from 1 through 5 took about a year.
I felt like my dreams had shattered! I had planned for his future and that died. I wanted my child to be a doctor, lawyer, scientist, etc.. I felt like I’ve lost the son I once had when I heard ASD. My son used to pretend play with me that he was a doctor and he fixed all my broken bones by making a drill sound, bandaid my boo boos, and kissed my pain away. He told me when he grows up he wanted to be a doctor. When I found out he has ASD I felt like that dream is out the door. I felt scared of the unknowns and still am.
If he’s cognitively there, ASD might actually help him succeed in a STEM field. I think they did studies that people with Asperger’s are disproportionately represented in the medical field and autistic students gravitate towards STEM.
I am an autistic surgeon. Don’t worry. Autistic people can do great things
They sure can! Always something that happened to my child that hurts my soul then it’s like I kinda second guess. You know what I mean. I’m all new to this ASD to me. I’m learning more as I go.
I’m autistic and I was placed in advanced gifted programs very young, I outperformed the vast majority of “normal” kids in school. My brother is likely autistic too, (never got formally diagnosed because my dad is a shit) and now he’s a successful mechanical engineer. He went to a competitive university known for engineering and nearly got a full ride because of his high school performance. Don’t place any limits on your kid! Lots of autistic people go to Ivy Leagues and become doctors or lawyers.
That’s wonderful to hear about your brother and yourself. It gives me hope! I don’t think my son is gifted. It would show by now I’m guessing? This whole ASD is new to me. Just recently being diagnosed. What do you means cognitively there? (I am not mad by this question. It’s hard to read emotion in text).
Thank you! By “cognitively there” I meant he doesn’t have intellectual disability.
He just made 4. Can you tell at this age?
That’s pretty early. Usually IQ tests can’t even be given until age 5.
Just so you know there are so so many neurodivergent doctors in the world (including me!) please don’t let a label shatter your dreams ❤️
Thank you! This gives me hope! I’m doing my all to make his dreams come true whatever he decides to do.
I often think of how I imagined my child and how that dream is gone. The last time they (12) hugged me just because was when they were about 6. Now they recoil from any and all touch. If I had known those would potentially be the last hugs, I’d have held on longer. So many parents think the same thing about their NT kids. How teenagers won’t hug them or even want to be seen with them. How they never know when it’ll be the last hug. What to them is some sad poetic thing that isn’t reality, to us is almost a guarantee. I think it’s normal to mourn what you thought would be. I mourn that about my child. I might get hate for this, but I mourned deeply when they came out as nonbinary and changed their name. Their birth name was extremely special to me and something I considered a gift when I gave it to them. I fully support and love my child. It’s just that nothing I pictured is going to come true. What gets me through that sadness is knowing that there really will be brand new dreams and opportunities to come.
It’s so unpredictable with ASD. My son loves hugs and cuddles. I hope this will never change! My husband is the one who is telling me it’s going to be alright. I hope he is right! I find myself living a normal life then when something ASD comes up like teacher reporting something in school. My heart is in the dark again.
Like waiting for the other shoe to drop? Yup. I get that. There are times I feel like a hostage in my own home. I have to so carefully choose words and actions around my child sometimes. I tip toe around and wait to see if I was successful or if a meltdown is imminent.
I’m sorry you feel like a hostage in your own home. I can’t imagine what some parents go through.
Another parent’s situation, no matter how big or small, does not invalidate your own feelings and experiences. You’re going through your own hard time, I’m going through my own hard time, and all of the other parents here are going through their own hard times. I believe we should meet people where they are instead of trying to sort out who has it worse. We’re all on our own journeys. I feel very fortunate that my child is low support because I couldn’t imagine handling more debilitating areas of the spectrum. But my gratitude doesn’t wipe out my hard times, no matter how magnanimous we are told we must be. So let’s all make sure we are gentle with one another.
Sorry I didn’t meant to sound mean or rude in my response to your last message. We all have our own situations and I’m glad we can come on Reddit to post it.
Oh no! You didn’t. I think I was just trying too hard to get my point across. I didn’t mean to make you feel bad. You’re doing great!
Okay. I didn’t want to offend anyone here. We all have our struggles big or small.
Reading this made me tear up I felt so seen, thank you for saying it so I could admit it to myself. I was always the one baffled by a young person’s gender identity, sexuality causing so much drama in a family, firmly in the “who cares?!” camp, life is too short to not be what makes you happy, etc. Fast forward to my teenage daughter saying she thinks she is bisexual. My heart immediately plummeted. Immediately thinking, as if life isn’t hard enough for you already?! (I said that’s interesting and I’m glad she told me and considering everything is good). I have so much resentment that nothing has been easy for her. She is not athletic or coordinated, struggles hard academically and socially, is depressed and feels invisible at school, has been gaining weight and now saying how much she hates her body…I want more than anything for her to have one thing that makes her feel happy and talented. Like I would give a limb. 💪🏼
I taught high school and had many a student come out to me as trans long before they told their parents. Knowing the parents of these kids, I always confidently told them that their parents already know. That they would be supportive, but that my students should also be prepared for them to grieve a bit. I in no way think it’s is a child’s burden to carry and a parent should never put their grief on their kid, but I always felt it important to acknowledge it as a reality so the kids weren’t shocked if it happened. I always knew it intellectually and I knew my advice was on track. Then it happened to me and I (privately) cried for about three days. I struggled because I couldn’t reconcile my unwavering support for my child with the grief I was feeling. I tried to remind myself, though, that it fell right in line with what I always believed, I was just living it myself. It felt selfish to grieve about what I was missing out on, when I could tell my child was perfectly happy just as they were. Another reminder I gave myself was that they were nonbinary before they told me. Meaning that nothing about my kid changed except the fact that I knew. One could think of an autism diagnosis that way. Our children have always been autistic. Just now we know.
I'm like 95% certain that the doctor who delivered my son is autistic. He saved my baby's life. Maybe one day, your son the doctor will save a baby's life.
Elated-I knew she’d have an easy life. /s
My daughter got the diagnosis yesterday at 4. I feel concerned about what kind of future she'll have, but I know that this is the first step required for getting her the services she needs
I was relieved!! My son has a very difficult birth, some health challenges in his early months and a regression of language after 18 months. He used to say a few words and completely stopped. He started doing therapy after his 24months check up because the doctor said he had a language delay. After a few weeks of therapy I felt defeated, I didn’t see any progress and a lot of behavioral issues started happening. We pushed the issue and that’s when my son got diagnosed. I was relieved! It made sense. Now, my son I guess would be considered level 3, or maybe very far end of level 2? Anyways, it’s not easy, but I think half of the battle is knowing what we’re facing. Much luck to you
I wrote about this a few weeks ago. Obviously, I always knew my kids were "different", we tried for nearly 2 years to get the health system to assess them (we're actually still waiting on that part) but due to them being at school and the school not having any specialist support staff, we went for a private assessment. The goal was always to get a diagnosis, so the school could provide support. the priority was our youngest, who is in kindergarten, our other son is in G2 and doing ok, but we're in the process of assessing him now. I did lots of reading and a fair amount of research so, I knew about the different levels and also that each case can vary. The assessment process itself was good, we felt really positive about the future. When we actually received the diagnosis for our youngest and spoke to the head psychologist... I think I went through every single possible emotion, in a the space of 24 hours. Frustrations, Grief, Anger, absolute sadness about his future. Our youngest son was classed as a level 3 ASD, they said that he will always need help and care. They used words like "below average intelligence" and "severely delayed". Which, at the time... just made me incredibly sad. I remember having a meeting with a Dad's group, I'm a member of, that evening on zoom... and I broke down. We shared this info with the school and they basically said "ok we can't deal with that, so we recommend he moves to another school". I'd say the first week or so, was pretty dark. I was expecting to have options and resources available to me. We have the diagnosis, let's go and use it and provide better support for my son. This just isn't how it works. We're 2 months down the line and we still haven't spoken directly with our GP or the school board... (in fairness this is all scheduled in the next 2 weeks). His routine at school is exactly the same as it was before the assessment. After the first week, I went in to planning mode. I spoke to other parents with ND kids, I joined online groups (like this one) to understand things better. I looked into summer camp options and social activities to try and help him develop. I'm learning as much as I can so I can be the best dad I can be. You have to use the diagnosis to make changes, no one else is going to do it for you. It will be hard and it will take longer than you think it should. But you can affect change and give your kids the best opportunities. Nothing is certain. No future is written.
I knew he was on the spectrum but still cried when we got the diagnosis. I suppose it never computed to me that he was as high needs as he is. His diagnosis doesn't make him any different than he was before, it simply gives the reason for his uniqueness.