My 20 year old son was diagnosed last week

[Marrah_G]

Aspergers, ADHD and MDD after a neuropsych evaluation. The doctors said he should have had this test long ago but I had never heard of it. I had suspected Asperger syndrome for a while but the Docs kept misdiagnosing as just ADHD. Apparently this happens a lot.

Now he has access to a bunch of different programs, is part of a research group, can get ssdi, special programs at community college and I don't have to worry about him ending up under a bridge if something happened to me.

If you suspect something is wrong, something more then ADHD, get your child tested. I wish I had been more of a bulldog about it years ago. His first 20 years wouldn't have been so hard.

[Demeter]

1. Don't beat yourself up. Even with a complete diagnosis, it would have been hard

Even the highest functioning AI has a lifelong and severe handicap over the neurotypicals. After all, that's what society is geared to.

[Marrah_G]

2. Not really beating myself up- I just wished I had pushed harder

My best friend had identical twin daughters with autism. They were diagnosed very young and are doing very well due to their mom's stubborness and wonderful talent of finding resources.

I really owe her so much. He is 20 and wants more then anything to just be normal and fit in. It wasn't easy to convince him to open up to the psychiatrist who ultimately sent him for the testing. She was a HUGE factor in getting him to be honest with himself and the doctors.

What I am finding online is that people think it is cool and hip... for my son it has been hell.

[SheilaT]

3. For what my opinion is worth,

I think it is not altogether a terrible thing to have a late diagnosis of Asperger's.

My son is now 31, and we didn't figure it out until he was 18 and halfway through his senior year of high school. I think he had a more normal life because of that.

However, now that you do have the diagnosis, do make use of every support out there. Especially if he is in college: make sure that they know it there and give him all the services he needs.

[hunter]

4. Cool and hip? I think not.

My own experience, from middle school until the time I graduated from college was an endless PTSD inducing catastrophic misadventure. I have a lot of physical scars too.

I quit high school for college but I was "asked" to leave college twice, under threat of permanent expulsion. It took me nine years to graduate. During that time I had a number of jobs and was at times homeless, not because my family ever refused me shelter, but mostly because my parents' house was a place of high drama, especially after my grandma moved in with them.

Out on my own I was a terrible house mate. People I lived with may have thought I was some kind of space-alien. Sometimes I felt that way myself but mostly I was oblivious, wandering in and out at all hours, eating strange foods, and inexplicably disappearing for long stretches of time.

My grandma had been evicted from the home she owned as a danger to herself and others and she was never able to stay long in "assisted living" places without causing trouble. I think the only things my grandma ever understood on this earth were hot metal, horses, horny sailors, dogs, and showing up for work on time. She became a welder in World War II and was one of the few women kept on when the war ended and the men came home. She continued working until she retired with a good pension. Her successful career probably wasn't any kind of admirable trait, instead it was a pathologic synergy of OCD and extreme resistance to change.

My kids are lucky. They have fairly normal grandparents who channeled their obsessions and manic energies into the arts and sciences. My grandparents were a dysfunctional mess of "high functioning" autism, major depression, and bipolar disorders.

I'm lucky too because modern meds and other therapies are helpful.

When I was a kid the usual guidance I got was to "tough up and be a man!" and other such balderdash. Once I'd finished with puberty I got a job as a furniture mover and people quit saying things like that, probably because they were scared of me.

[Marrah_G]

5. How are you doing now?

Are there any therapies or programs that have helped you more then others?

Perhaps I should explain the "cool hip" comment.

I've seen a lot of self-diagnosed or (diagnosed by a counselor instead of a DR) young people online who think that Aspergers is just being socially awkward, nerdy, etc and seem to bear little resemblance to what I've seen my son going through all his life.

[hunter]

6. Not bad, but I wouldn't say "fully functional."

When I was a kid a diagnosis of Aspergers or Autistic Spectrum wasn't in the picture. It was common for outsiders who noticed I was strange to blame it on my mom's parenting, so little did they know. It's similar to people who get upset today by leashes on toddlers. They've obviously never had to keep a little runner-climber alive.

I did get speech therapy in kindergarten through second grade. (I entered kindergarten reading well so I skipped that part of class to see the therapists.) I also got some kind of "posture" therapy because I was a klutz. If I wasn't damaging myself, I was damaging some other kid by knocking them down or falling on them. For a time I was banned from the schoolyard swings and "monkey bars." This was public school in the 'sixties so even if the problem was unnamed the therapy was appropriate.

As in adult I have a doctor diagnosis, and I've had several years on and off of "talk" and group therapy. I can "fake it" in social situations but lately it seems to take more out of me. I'm tired of faking it. The most difficult job I ever took was as big city public school science teacher, yes, I was that good at faking it. I didn't feel like a good teacher however because I don't naturally "read" people. A good teacher identifies potential trouble and deals with it before it escalates but is otherwise easygoing. To maintain discipline, especially in troubled, crowded, big city environments I had to be an authoritarian and I hated that. The next job I took went to the other extreme, working largely alone nights and weekends in a big medical building that was always full of people during regular working hours.

Modern medications are helpful dealing with the OCD, depression, and other symptoms. Unfortunately they are never perfect, either the effectiveness fading, or the side effects becoming less tolerable. I've quit meds a few times and revisited my dark place. I've also suffered meds that made me feel dull, unwell, itchy, twitchy, obliterated my libido...

I'm married to a high intensity woman. Maybe we compliment one another, but not always in a good way. Our kids were straight "A" students in high school and accepted to very good colleges. Our youngest child will graduate this year.

I'm not a good judge of my own mental state, especially as it relates to the rest of society. In my "natural" state I'm a hermit. Without meds it's a very, very dark place.

[mackerel]

7. I'd be interested to know if you are successful and getting

your son on SSI. We're having a hard time getting the administrative law judges to recognize the limitations and give favorable decisions in our jurisdiction.

[Marrah_G]

8. We have not been successful

Everyday is a struggle.

[SheilaT]

9. I am certainly sorry to here that every day is a struggle.

But I'm not surprised. Especially given your son's age.

My son, now 32, is functioning fairly well, but I worry constantly that something will go catastrophically wrong. Right now he's finishing up his bachelor's degree in physics, and yes it has taken a very long time in no small part because of the Asperger's. He has been accepted into the PhD program at the university he's currently attending. It's a decent school, but I really wish he were going somewhere better. He would get accepted almost anywhere, but for him the comfort level of staying in the same school is enormous.

So now he's set for the next few years, doing research, taking classes, working on his thesis. Eventually he'll graduate and while I shouldn't even be thinking about it at this point, I have no idea what he will finally do for real, full-time, paid employment at the end. I do rather suspect the professors where he is will tend to make sure he gets some sort of job, and that's reassuring.

So hang in there. It's not easy. It's never going to be easy. I'm guessing that your son, like mine, is a completely amazing human being. I'm finally, in the past few years, at the point where I wouldn't have him any other way. But there was a very long time when I wished I could wave a magic wand and make him "normal". Now I'm glad that didn't happen.