Letting my son know - Last minute cry for help...

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Things have got so bad recently with my son starting secondary school.

We had a 'diagnosis' when John was 8, but unlike his diganosis for dyslexia it was so vague; a lot of the traits of aspergers he doesn't have:

- He always makes eye-contact
- He has an amazing imagination

We also felt it would confuse him more at this time and he had taken the dyslexia badly so it was left

Now he is saying he wants to die. We are desparate and the medical people are saying we must tell him.

We want to do it right; to make things better not worse. Any advice and experinece will be very gratefully recieved

Thanks

My son is nearly 11 and only got a formal diagnosis about 3 months ago, but we knew it was likely for the last while, and I think he was probably only 8 when we mentioned it first. We tried to pitch it as a positive thing - you can concentrate better than others on your special interests; you're more truthful; Einstein probably had this too; now that you know how your head works learning will be easier because we can use tricks that work for Aspies. And so on. Dyslexia can be pitched like that too - read Ron Davis' book, The Gift of Dyslexia, or check his website.

The thing is, he knew very well that he's different. When he didn't know why, it was a lot more disturbing. Now he knows there's a reason, and he's kind of proud of it. He knows there are downsides too, but they're predictable and we have ideas re solving some of them. He knows I have it too, and it's nice to have things in common. A family member who has had some success in life despite being on the spectrum is a good reference point.

The eye contact isn't always missing with people on the spectrum. Each person has a very different version of Autism. The more you know about his particular presentation, the more you'll understand how he ticks. Being aware of his sensory sensitivities could help a heck of a lot. There are questionnaires on the net to tease out that sort of thing.

Good luck.

Tell him of all the aspies who made the world turn round. Thomas Alva Edison, Amadeus Mozart, Vincent Van Gough, Albert Einstein, all these aspie men had something to contribute, and there are a lot of aspie women who have made it and help so many others. Edison invented the light bulb, Mozart made music so beautiful it is still a timeless classic, Van Gough although he cut his own ear off created works of art so valuable none can put a price on them (your son could relate to van gough I think), and Einstein suffered from his own isolative tendencies and failed high school only to become a college professor. He has something to take as a challenge. God gives his toughest challenges to his strongest warriors, and your son is no exception.

This approach sounds very good in principle, but I see a minor problem with it. Consider the time period those people lived in. Yeah, they didn't have things like cell phones, Facebook, WrongPlanet, or (vomits in mouth) Instagram. But they had a more forgiving social environment than we do. Even if those people didn't have groups of friends following them everywhere they went, they were also left alone to do their own thing, in a sense of "he's a weirdo, just leave him". Today, those same people would be arrested on trumped-up charges like "disorderly conduct", prevented from advancing their careers "because they're not a team player", ignored by record companies because they don't look like Justin Bieber, and probably Baker Act'ed for engaging in self-destructive behavior (like Van Gogh and his ear). My rant is largely US-specific, but just saying.

And while I don't make a habit of debating religion, the "toughest challenges" are the reason why I became a fervent atheist, enough to sell my Star of David, that I originally bought in a synagogue in Israel, on eBay for $20.

Keep in mind two things: first, no child on the spectrum has every single trait. Many kids/people have eye contact issues, but many don't. Second, the imagination thing is often misunderstood: my son has a fantastic imagination - it just isn't social in the way other kids use it (for instance, he would assign "roles" to his playmates so they could role-play in his script, but he flew off the handle anytime anyone refused to act the way he wanted them to; he couldn't negotiate his vision and play cooperatively.)

There is a whole section in the "Parenting Index" on disclosure that I'd recommend you browse (stickied on the top of this board.) Before you do that, though - I'd recommend going somewhere to get a full assessment by a multi-disciplinary group that specializes in pediatric developmental disorders: often, these are headed by a pediatric neuropsychologist or a developmental pediatrician. Look at what your insurance suggests (If you're in the US and don't have insurance, check with your State's Department of Public Health and find out if there is a low-cost insurance program for kids.)

We had a lot of the same questions you did, and when we finally got the assessment, we found our school's "diagnosis" had gaping holes in it and we were missing all kinds of services that would have made things significantly better. You want to find somewhere that offers the tests recommended by the CDC (if you are in the US - the tests are still the standard elsewhere, but I'm not sure how you get them outside the US) http://www.cdc.gov/ncbddd/autism/hcp-screening.html in particular the ADOS is the gold standard. In particular, my son was struggling socially because of a Pragmatic (social use) speech deficit, which we discovered could be treated at his school - but they didn't offer that information voluntarily; we had to ask.

Have you spent any time in university? If so, you'll know that plenty of people show prominent AS traits without it interfering with their careers. At least a quarter of my professors appear to be on the spectrum.

Aspie1 has a point, though - although I think things are beginning to turn around again. DS and I were just reading one of Richard Feynman's autobiographies and if he didn't have AS, I am a rabbit (the title, "Surely You're Joking, Mr. Feyman" is from a classic AS social miscue situation.) Nobody really seemed to care that he was odd until he tried to enter the armed services and failed the psych test (again, for largely social communication errors.)

I don't think he would have gotten as far today - the kids who take apart electronics and blow stuff up are, indeed, frequently criminalized. I agree that academia used to be a real sanctuary for people on the spectrum, but now there are not enough jobs there, and people who have those jobs are retiring later and later.

I do think our world is slowly changing and becoming more accepting, even if it is happening slower than we would like. I think the work of ASAN and GRASP have been really important in that change.

I also think that parents make a major difference and can be a buffer between people on the spectrum and a sometimes judgmental society: many famous people on the spectrum had parents who were uniquely understanding - Feynman, Tammet, Grandin...

Yeah, I think all the pressure with cramming the kids full for state standardized tests have made it worse, b/c no one has time to deal with being flexible. Even when you have a great teacher they do not have the leeway.

My mom (who is very old, now) tells me that back in the forties every class, "always a kid that would run around, could not keep still, and it was OK." My mom was probably exaggerating, but still, if they could be more flexible during a more conservative time, you'd think they could be now, too. But no...they cannot. I never remember it being quite so free as my mom describes, but it was not like today, either.