How can I tell my son he has Aspergers?
I’ve recently been reading your posts on Aspergers to help understand how to support my oldest son, and frankly to better understand my own personality as well. I suspect that I have Aspergers as well, and feel that this understanding could have saved me years of confusion, struggle, depression, guilt about my isolation/avoidance tendencies and life choices.
Re: your recent education post about the dinosaur dig conversation when noticing another kid(s) on the dig had Aspergers, but the parent probably didn’t know. That gave me a zing — I connected with that — that you had this casual, shared observation with your son about Aspergers. (No big deal — it’s just what it is. Oh look, there it is.)
My questions: at what age did your son learn of his Aspergers? How did you tell him? What made you choose that timing/age to talk to him about it? Do you have any guidance to share on this?
The advice our pediatrician gave us, years ago (diagnosed PDD-NOS, sensory integration, mild/high functioning) was that he needs to stay immersed amongst “typicals” and to keep him engaged, to support him with his sensory integration with OT, but not to worry about the label. Not to identify with it. That labeling could cause more issues to the developing self esteem. But we were also told that as he got closer to middle school, he would probably exhibit more as Aspergers, and to re-evaluate then if it starts impacting his school life.
Well, sure enough… He is now eleven, becoming more self aware, and (outside of our home) his social skills are often awkward and off the mark. But as homeschoolers, and as a quiet home-body rural family, his Aspie stuff isn’t impacting us, nor his educational path. His siblings/family and dog are his close companions, but he only skims the surface with his homeschooling peers… No close pals. (he says he really wants a close friend, but he still really only ‘parallels’ with others outside of family.)
It should be noted that it was public school that was impacting his self esteem. It was disrupting our entire family life. As soon as we pulled out, after struggling for months about IEP issues, then we finally pulled out after a significant bullying episode (violence against our son), our lives as homeschoolers quickly became peaceful and interesting. We pulled out during his 1st grade year. We never looked back.
He doesn’t remember all the IEP/intervention/classroom assistant/social support stuff, plus the two years of private therapy. Quite frankly, I wish I didn’t remember half of it, it was overwhelming. I feel like a lot of it wasn’t even needed — like we were sucked into some huge early-intervention/diagnosis/insurance loop/IEP/public school funding machine. But we just never really talked about it.
Other than “everyone is different and unique and sometimes we need some extra support sometimes.” So, no. I’m not at all psyched about possibly re-evaluating or identifying him as autistic when his only real reference so far is a severely, low functioning autistic teen who is our neighbor, and who holds a soft spot in our hearts — but that is currently what “autistic” looks like to my son’s eyes.
The kids take other homeschool classes too (tennis, martial arts and violin), so they are out and about a few times each week. But I’m a major introvert, and I could stay at home for weeks and weeks and be happy as a clam. I have my kids, my husband, one good friend, my books — that’s all I need. But I know that my kids need more. Yet, I don’t value all the attempts at park days and co-ops, because they burn me out after just a few weeks — and I don’t see the benefit of putting up with all the crap involved for the little bit of social reward/balance that is gained.
Ultimately, I feel like our comfy cozy nesting days are coming to a close. My oldest is now a tween. He is realizing that he feels like a fish out of water more often than not. How do I start the conversation, referencing the more accurate Aspergers label, which isn’t even recognized anymore?
Here are some rough guidelines. I hope that everyone who reads this remembers that Aspergers should be just like adoption – it’s way easier to tell the kid early. It’s more honest and it makes the situation not a very big deal. Just something that is true about the family.
1. Leverage the genetics.
Aspergers is genetic. Either you or his dad has it. So a good way to talk about it is from that perspective. Everyone has strengths and weaknesses. Mom does. Dad does. Talk to him about his strengths and weaknesses.
2. If you have good knowledge about Aspergers you’ll know about the strengths.
In our family we all understand Aspergers very well. People with Aspergers have poor social skills, but they have good traits, too: My son with Aspergers is very very smart. He can memorize anything. We talk about how that is a trait of people with Aspergers. We talk about how people with Aspergers can’t lie. I try to tell him a lot how much I appreciate that.
3. The parent and the child can share quirks. And laugh about it.
Often my son and I will have similar problems. For example I don’t feel heat like other people, so I get burnt a lot (I have burn marks on my arms). He doesn’t feel cold so he gets nearly frostbitten a lot (he has marks of early frostbite on his hands if I’m not careful to remind him about the winter cold.) As a family we laugh about that because it’s weird, and so different than everyone else.
4. Everyone can work on the problems together. In the open.
What works really well is that we are clear that he’s not the only one who has it. When I tell him “You have to stop talking when you’re nervous. You say inappropriate things.” I can also tell him, “When Dad tells me to stop talking, I stop. I don’t think about arguing with him. And you need to do the same thing. Neither of us are good at knowing when to stop talking.” That softens the blow for him because we are both doing it.
5. It gets much worse for adults. So start coping now.
Your son looks artificially normal right now because he has a very controlled environment. Most of Aspergers is about not being able to cope with unanticipated things in life. It’s important to put your son (and the Asperger parent) into situations that are difficult so everyone can learn from them.
Also, remember that you are able to isolate yourself from most of the world because of your unique homelike situation. But your son is not likely to be able to do that as an adult. You need to prepare him for that so he doesn’t implode from stress.
6. Talk matter-of-factly about Aspergers. Like sex.
If you make a big deal out of saying the world “oral sex” then it’ll be a huge deal and no one will feel okay talking about it. Same with Aspgergers. Just talk about it as part of life. Some people are fat. Some people are not very smart. Some people have Aspergers. Whatever. Everyone has something that is hard for them that they have to work on. Talk about that, too. Point out weaknesses of neurotypicals so your son sees everyone has a weakness.
7. Give him hope.
People outgrow a lot of Aspergers traits because social skills can be learned, as in memorized, but it takes time. I wish someone could have explained to me that I was socially about five – seven years behind my peers. It would have made sense to me. (I played with much younger kids for most of my life anyway.) And I would have understood that eventually I’d catch up — in my 30s. That would have encouraged me.
I hope this helps. And I hope you start talking to your son right away. Also, remember that the more isolated he is from things that are difficult for him to more surprising this conversation will be. Isolation is not good. It’s bad for learning.
Good luck!
Penelope
Penelope, thank you for your answer! I will start the conversation today. And your words about isolation will be a beacon for me. Isolation is indeed my default preference. Now that I truly recognize this tendency to isolate, and as I identify Aspergers in myself (and my father, for that matter), I actually feel empowered. So many long-standing issues and old hurts are actually making sense, and I can let some of it finally fall away. And I can move on, and start challenging myself. Moving forward to make choices that put us out there more.
Thank you again for your time and guidance. Your work is a huge help. I truly appreciate it.
It horrifies me that your doctor gave you this advice: to immerse him with neurotypicals and to try to ape their behavior! It horrifies me that he thought there was no point in identifying as an Aspie (or autistic). My son is autistic and he KNOWS he’s different. To not attempt to instill pride in him would have been awful. I think you are a REALLY good parent for asking this question and for advocating for your kid, and for home schooling. (I also think the early intervention stuff probably helped him more than you know — not necessarily to pretend to be neurotyical, but to dull the constant assault of the world, a bit). Props to you. I’m sure you’ll handle this the right way. Can I add to this advice and suggest your son look at the web site for Aspies called wrong planet.net? It’s a social networking site specifically for people on the spectrum. I also found peers for my kid at science fiction conventions; nobody thinks he’s weird for wanting to play Magic: The Gathering for hours on end there. Good luck to you, and to him.