it's 'national autism week'...

That may be true and I agree that shockey probably should just talk with his friend about it. I just think it is important to remember that you cannot lump all people with autism together. There is a very wide variation in the level of disability along the spectrum.

 

It's not anyone's fault whatsoever, but I get soooo tired of the Temple Grandin did this/my friend's cousin with Asperger's accomplished that conversations.

My son's not going to do that stuff. He's not going to go to college, he's not going to hold down a job. He's freaky smart in his own ways and I'm thankful that it's not even worse, and I look forward to continuing to see him through his life's journey as he progresses and grows in his own ways, but he's not going to do that stuff and we're not going to be able to pretend everything's normal and he's just a little quirky.

A lot of parents with autistic children do a really poor job managing the line between giving your child real chances to challenge themselves and not being honest with themselves about what they are dealing with. I'm kind of thankful in a super weird way that my son's not just a little less disabled, because I don't have to deal with that. It's clear what we're dealing with.

We had a family friend who is going through the process right now. Their son turned 18 last year and has Asperger's. His Special Ed program dragged him through high school, but he dropped out of college quickly, flunking his classes badly. In a five-minute conversation, you'd probably just get the impression that he was kinda weird but not that he had a full-on disorder. But he is utterly incapable of setting and meeting goals or taking directions from a superior for any length of time, so getting and holding a job will be a disaster when he gets around to trying it.

And so now all of a sudden they are realizing he is 18 and completely incapable of living on his own or supporting himself in any way, and as silly as it sounds, that apparently never occurred to them until just now, and it's causing all kinds of emotional turmoil and strife. I still don't think it's sunk in with him yet, to be honest. He talks a lot about grand plans he has for his future, but he doesn't have a prayer of actually accomplishing them.

 

Thank you for sharing that about your son and about the 18-year-old. I think people need to hear those stories as much as they need to hear about people like Temple Grandin for the exact reason you stated. People need to realize just how different the disability is from one end of the spectrum to the other.

 

The other thing, about Temple Grandin's story, is that she had many struggles with employers before she became established.

 

Did your friend's son go to school full time or part time, and did he go away to school? That might have been part of the issue. If he wasn't academically prepared, he might have been better going part time and being able to concentrate. And of course, going away to school has it's own stresses for any kid, much less one with Asperger's. Perhaps going part time at a community college would have been better.

 

He was living at home and taking three classes online at the local community college, two of them online-only and one that his dad drove him in for twice a week.

It's one of those where it'd be easy to get frustrated with him because if you didn't know better, you'd think he was just a lazy teenager, but it's a real outgrowth of his disorder that he gets obsessed with whatever he wants to do at any given moment and gets severe emotional distress doing anything else. It sounds weird, but I've seen it in person: Even simple daily chore lists from his parents turn into epic emotional struggles that end with him shutting up in his room, balling his eyes out. (Telling that story reminds me of the kid with Asperger's I had in my English classes in college. He seemed a bit odd but no-big-deal until one day he's outside the classroom building, tears streaming down his bright-red face, screaming hysterically at someone who was smoking a cigarette a few steps too close to the door, which is against the rules).

 

I coach sports for kids and young adults with special needs in my area and see this kind of stuff quite a bit. The denial usually goes away gradually over the years as parents understand their kids' capabilities and come to terms. But not always. About a year ago the parents of one of the kids I've known for years, a sweet girl with Williams syndrome who is about 24 or 25 now, insisted on letting her take driver's ed even though there's no way she's physically or emotionally capable of taking on that kind of responsibility. They take the position that she should be able to at least try to do anything she wants. The rest of us kind of shake our heads.

Another one of my favorites, Sam, has twice been caught taking his mom's car out for a spin around the neighborhood. They keep the keys hidden now.

 

I read every single scrap of paperwork that comes my way, and when my son was formally diagnosed, we got a huge book from Autism Speaks that I'm betting a lot of parents don't end up reading all that closely. It talked about how the two most stressful times in an autistic-child parent's life are immediately after the diagnosis and when the child turns 18, because of the denial we're talking about.

It was a year-long lead-up to the diagnosis, so we knew it was coming, but I was still in a bit of "Well, Abed is hilarious and family-friend's son is pretty cool, so this isn't a big deal he'll just be quirky once he learns to talk" denial. Then in all that paperwork they gave us is some clinical stuff about life expectations, written in no-nonsense scientific terms, and it hit me like a ton of bricks. I went into a pretty deep depression for a few months, but at least I dealt with it then and not in 15 years.

We're struggling with what to education-wise with my son right now. He's in pre-K, and his school insisted he should be in a regular pre-K classroom because his academic skills are off the charts but he has almost no communication or social skills, so why not challenge him?

I suspect the real reason is that special ed is expensive and every kid they can get out of it is another $100k or whatever on the bottom line. But who wants to argue with the school psychologist who is telling you your son is too smart to be in special ed? So for now we're going along with it, and he's crashing around a regular pre-K classroom taking up *way* too much of the teacher's time at the expense of all the other kids. But when kindergarten comes around, we're telling them we want him either in special ed or in regular class with a personal classroom aide.

 

My cousin's situation is pretty interesting. Unmedicated, I would not wish him on my worst enemy. He has said the craziest shit I've ever heard a human being say to another person.

What he has going for him is he's brilliant. Engineering degree from Stanford. He's been on heavy medication since he got to Stanford, but you still see some of the crazy statements come out every once in awhile. It's the kind of stuff where it's clear there's no filter whatsoever.

He's been at the same company for the last 20+ years. They don't let him interact by phone with clients or supervisors. His filter is a person who sends emails on his behalf and makes calls on his behalf. Most companies would not do that for someone, but he's been very lucky in that regard.

His wife is an interesting one. She's a law professor and is very cold and thinks in a very technical way and doesn't blink when my cousin makes the kind of statements or declarations that he's prone to make. He's also better around his wife than he was around his parents or sister or other family. His kids are amazingly well-adjusted.

I think people understand autism better than they do Apergers because so many people who have it are very high functioning that people have a hard time understanding how someone could be so intelligent despite having an affliction.

 

That's exactly the case. You're likely in for an annual battle to get your son the services he needs. Does your school system have a special needs PTA (SEPTA)? If not, you may want to consider starting one.

http://www.pta.org/content.cfm?ItemNumber=2100

 

You also may want to look into if your county social services offers a free parent advocate, to help you at the meetings. Some are very good, and others, not so much. You also might want to look into getting a lawyer who specializes in special needs issues. They're expensive as hell, but for us, it was well worth it.

Our school district did exactly what you said, Rick, claim he was fine and then, they'd be on the phone with us every day complaining about something our oldest son was doing, and even resisting hiring a 1-1 aide for him. And when they did, they had him share the aide with another kid, who got 90 percent of the attention. We finally got the lawyer and she straightened them out pretty quickly and got him in a special needs school. Now, the mere threat of us calling in the lawyer (who has since moved on out of the area, not that they know about it ), gets the district to do what we want.

 

That's the right approach Rick. Don't yield. Do what is best for your son. My family can relate.