Struggling with potential ASD diagnosis
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Anonymous
| In talking to a counselor about our recent diagnosis and all of my complex feelings about it - there’s an overwhelming feeling of grief. Grieving the childhood and future you thought your kid would have. I try really hard to insulate my kid from these thoughts. She has enough going on. She knows I’m sad a lot. She doesn’t need to know it has to do with her. (Though she’s bright and likely suspects.). Therapy is really helpful for this. It helps me get the tangled feelings out in a safe space. |
Anonymous
| Both my kids are ASD, ages 18 and 21. If it’s any comfort, I literally lost my marbles at first diagnosis (age 5 for oldest) because the future was so uncertain and you do grieve the child you thought you would have. Now I see them and love them for who they are—although especially for my girl it’s hard to watch the social challenges. Hang in there! |
Anonymous
| Also I totally feel you on the left out feelings. We live in a lovely neighborhood full of neighbor kids the same ages who all play in each other’s houses and yards every afternoon. My kid can’t get along with them. They sometimes bully and often exclude her. It sucks. We are friends with all the parents and the kids are reasonably good kids but we can’t make this work. Our kid is just different. And it hurts. And that’s real. And sometimes it’s your brain telling you everybody else is doing great and it’s exaggerated internal thinking - and sometimes it’s grief over the real and painful circumstances of raising an ASD kid. |
Anonymous
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I hear you. It can be really hard, and what you're feeling is totally normal. I felt that I didn't have much support or empathy in these feelings early on, in part because I didn't have a network of other ASD parents when we got the diagnosis. Like some others have mentioned, I felt really left out and misunderstood by friends with kids the same age without ASD, and I felt like they just couldn't understand what I was going through. I lost a really good friend over it, and I still feel kind of bad - it was mostly my own fault, but she was also just really dense and insensitive. It was best, but it wasn't easy.
It got better with time, as I learned more about what we could and couldn't do and came to see that he was the same kid, with or without the diagnosis. There are still times when I grieve, though - when I see a friend's kid doing things my kid can't, when I think about the limitations my kid has, when my kid can't make something I know he wants to do work, etc. On the plus side, I have learned a lot about myself and was forced to deal with my own issues. I don't think my issues were more significant than most people's, but we all have issues, and I probably could have sailed through the rest of my life without dealing with them if I hadn't been forced into this life. There are some good things that have come from that. |
Anonymous
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Is there hope for (relatively) mildly autistic kids to have somewhat normal lives? To grow up and get married, have kids, have fulfilling normal relationships and careers?
I guess I’m trying to figure out what adulthood looks like |
Anonymous
Definitely! They will - plenty of autistic adults who don’t even know they are autistic living well functioning lives! |
Anonymous
I thought my kid was on track for all of this until middle school and the teen years hit. I'm less certain now. Ask me again in five more years. My advice for you is that at each different stage of your kid's development you will need to do - and be - something different for them. Don't live in the future (worrying too far ahead) but also, don't live in the past (re-trying that successful thing you did a year ago when it's time to move on). |
Anonymous
Definitely! Lots of people with ASD have relationships and careers. I think it's absolutely critical that you lean in to your child's strengths, and prepare for a career that is well-suited to both their strengths and includes the things that help them thrive (such as a lot of quiet time, or whatever it may be). It's been very interesting to me in my career as a tax lawyer to see that some people self-identify as on the spectrum and others don't, but there certainly are plenty of both! |
Anonymous
absolutely. I think what is helpful to understand is that it's not that folks with autism or adhd can't 'blend in' to the NT population on the surface (they can though of course you will get some folks who are 'classic' adhd (wildly distracted sensory seeking) or 'classic' asd (pushes glasses onto nose and monlogues about the carpathians) but a huge number of people 'appear' NT. Where they need extra support is in being their own executive 'coach' (getting themselves through life from an operational pov), social skills (namely identifying their own feelings and the perspectives of others) and self esteem (avoid mental health pitfalls). that is the work that a lot of us on this forum are doing and that you will be doing. BUT - newsflash - NT parents need to do this work also. no one is 'completely' normal. An ASD person who has had great supports through childhood is WAY more likely to have a successful relationship than an 'NT' person who has not. |
Anonymous
Absolutely. And early diagnosis and “treatment” increases those odds so much, so you are doing everything right to set your kid up for success. |
Anonymous
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It’s hard OP. My child was diagnosed on the later side, so it felt harder somehow (it probably feels the same for most parents going through the diagnosis process). I posted here for support and was told the exact same thing doctors and teachers had been telling me for years - “it must be your parenting because your child only struggles at your house”. Since then we’ve found so many people with kids who have SN, and sometimes in really unexpected ways.
Once at a basketball game my child had a major meltdown and another parent gathered our things for us and brought them to us while we managed the situation, and told us that her children had similar struggles and that we should get coffee sometime. I cried after I got home because no one had ever seen a meltdown of my child’s and been so compassionate and nonjudgmental before that. I try to remember that moment when I see parents struggling, and I try to be that person if I’m able to. |
Anonymous
| My heart goes out to you OP, I’ve been there, and struggled hard to accept the DX. Several years later, I’m (mostly) at peace. I’ve absolutely stopped comparing my ASD child to my other child or NT children, I’ve moved away from standard “benchmarks” parents set for their kids (like expecting them to go to a specific college or have a specific career or life path), I’ve focused hard on having the child find a supportive and enjoyable environment and the very best services I could find/afford, and most importantly I am taking it one day at a time, refusing to allow myself to worry about years out (and whenever it got too hard I made a point to refocus on self-care so I can be the best parent I can be), but as time went on I started finding out the amazing aspects of my ASD child, learned to be happy at their success, meeting them where they are (and not where NT kids at their age were supposed to be), and facing more calmly this journey despite the fact that I don’t know where it’s likely to lead and when the next challenge is going to come upon us. |
Anonymous
I am this PP and we have our diagnosis. I had almost convinced myself she wouldn't get the diagnosis, but after the appointment it is really clear to me. I just want to curl up and hide from the world for a bit. OP, you're definitely not alone! |