Wednesday, June 03, 2009

Looking for Asperger's Resources in Tehama County

I haven't talked about this much online, only privately to friends, but my 19-year-old son, Trevor, has Asperger's Syndrome. It's really been a long journey with him -- he was diagnosed late, but he was always "different". When he was little, I thought I was the mother of a budding genius. He knew his alphabet and numbers by the age of two -- in fact, he had an extraordinary fascination with them. He would ignore pretty pictures of bunnies and duckies to point at the page number, or the beginning letter. He used to read license plates. When he was two, he began reading words -- the first being "Sears" and "Raley's". When he got money for his 4th birthday, he chose a toy clock, and within a few months could tell time -- he'd already learned digital time from the microwave clock. He knew the times tables when he was six.

When I took my little genius to pre-school, the teacher suggested he had speech delays, and really pushed for him to be tested. Trevor got speech help from preschool clear until sixth grade, and it was this speech teacher that first suggested that he had some characteristics that were similar to high-functioning Asperger's kids.

Trevor remembers his school years with intense bitterness. Kids played tricks on him because he was naive, or just teased him for being different. Once he said to his speech teacher, while they watched the kids on the playground, "They're playing. I'd like to play, too, but I don't know how." By middle school he routinely spent his recesses just pacing the perimeter of the playground, alone. The few rare friends he had would inevitably dump him after a while -- in one instance, at a parent's insistence.

My thought, for most of those years, was that Trevor just had the social awkwardness you often see in nerdy kids, and that as he matured, things would get better. Then, one day, he became frustrated with something or another, and started screaming and hitting himself in the head, and I could no longer deceive myself: Normal eleven-year-olds don't do that. In fact, with the hindsight gained in my experience as a substitute teacher in Special Ed classes, I can see that this is fairly typical autistic behavior.

So I went searching for information on autism-spectrum disorders -- and in my amateur fashion it seemed like Trevor was hyperlexic. And, actually, I wasn't wrong -- hyperlexia is characerized by the kind of intense interest in letters he had as a young child. It was just one of the cluster of characteristics that make up his disorder.

In his Freshman year of high school, Trevor had a severe bout of depression that required professional intervention. It was around that time, I found that Sacramento State did low-cost testing, and I finally got the official diagnosis of Asperger's Syndrome. At this point, having the label was important so that he could get help when he stated attending community college.

That's where he's at now. College has been better than high school, with it's social pressures -- but it is not problem-free. In spite of his high intelligence, Trevor's grades are pretty average. He has trouble with organization and needs support from me to take care of the paperwork involved in attending college. When confronted with a new situation, he just freezes like a deer in the headlights.

Trevor desperately needs job experience. It's too much to ask to just have him go around town filling out job applications. We've tried nagging him to do that and gotten nowhere. He's afraid of new situations, and nagging just makes him feel bad about himself, which paralyzes him even more.

Another factor is that his odd mannerisms mark him as "different" and most potential employers would just roll their eyes and dismiss him. And his difference is noticeable: One driver's training instructor chewed me out for even thinking about allowing him to drive, comparing him to her retarded daughter. It has been really hard for me to see my early-reading math whiz grow up into a teenager that people mistake as retarded. They say that people with Asperger's Syndrome have about a 50/50 chance at being able to live a normal life -- but the older he gets, the worse the odds seem to be.

He also has big emotional hang-ups about being rejected because of his "difference" -- and job-hunting is 99% rejection. To just push him out into the world is a sure way to send him into depression. Besides that, Trevor tends to make mistakes that mark him as lacking "common sense" and bosses are unlikely to put up with that. So what he really needs is a program that takes account of his disability. He's quite capable of working, but he needs very clear and specific instructions about what he's supposed to do, and what he should not do. He's not a kid that will simply see what needs to be done and jump in there -- a bad thing in the job market where being a "self-starter" is so highly valued.

However, the local job programs for people with disabilities don't deal with Asperger's -- for them, Trevor is not severly impaired enough. We wasted all last summer trying to get him into one -- and after much testing, discussion, expense and paperwork, we were just told what we were told when I first called: "We don't do Asperger's". I think they figured that they could somehow recategorize him into another disorder on the autism spectrum, but no such luck.

So, we're just stuck. I really want to find some alternative to just keeping him in school as long as we can before just giving up to allow him live his life back in his room -- to write his stories, surf on the 'Net, and play video games.

10 comments:

loi said...

Gosh, Karen...I've no answers or ideas, but I have some understanding about how difficult this is for you and Jim and your son. Children grow up, but we always remain parents. How frustrating that all your efforts at finding some assistance have led nowhere....and you suffer as you see your son suffer. I know though that you just keep trying to find anything that helps your son to get the support he needs to deal with his disability. And yes, you get so tired and lose hope too. It's so easy for people to see someone with one arm or other physical disability and accept that they merit support. The problem with 'brain chemistry problems' are hidden...people expect you to behave "normally" because they can't see a disability...the challenge, the struggle, is a lonely one because there is no real understanding or acknowledgement of the difficulties or for the person living with the disorder.

My heart goes out to you. Personally, I feel sad and worry every day about my boy, but he's 31 now and mostly all I can do is try not to feel too sad or worry too much and call on whatever healing energy I can imagine.

Love, Lois

Karen said...

Hi Lois,

It was very nice of you to stop by. Part of the problem is living in a rural area -- the resources just aren't here.

I did meet a local mom whose son has Aspeger's, but we haven't been able to make any concrete plans.

Actually, the toughest part of Asperger's Syndrome isn't the disorder itself -- it's the emotional problems that come along with the social rejection. When Trevor was little, he was wide open to the whole world. This is a kid who would hug the phone repairman good-bye when he left. And he kept that wonderful innocent quality until he went to school at the age of 8. I homeschooled him until then -- and he wishes that I'd kept him on home study all the way through. He says that it was "the last time he was happy".

Now he fights depression, is extremely negative, especially about any activity that involves contact with other people, low self-esteen and all the rest of it.

You see, Asperger's kids don't understand what they're doing wrong. When he was 9, he started a conversation with a gentleman by saying "You're a very nice old man aren't you?" And it was charming. At 14, he tried to start a conversation by asking a man "How old are you?", and the guy just was taken aback. Of course, I told Trevor that it is inappropriate to start a conversation this way -- but he'll never understand why. That's the difference: He has to be specifically told what most of us just "pick up", and even when you tell him, social rules don't make sense to him.

loi said...

Hi Karen,

Thanks for your response. Yes, I understand that the emotional component, the long history of bad experiences, is a huge part of the difficulties in the whole situation. This is the aspect that makes us hurt so much for our children...they live in the reality of their perceptions and experiences and they cannot see the situation the way we do.

Life does intervene in good ways as well. Other people enter their lives and some of the difficuties aren't as prominent as before. I have found that in my son's life...there is still a lot of suffering and resistance to being consistent in doing the things that help...but life experiences have changed the way he perceives some of the situations and people around him. Honestly....it's what keeps me praying, calling on that energy of love and healing I have to believe in because my son suffers. More often now I can remember that if I had 'well-adjusted' and happy children, I'd be pretty smug and self-congratulatory, and I'd almost certainly not be sending daily prayers believing in a power outside myself. This attitude may be very slim comfort, but sometimes it's the best I can come up with. Anyway, I hope you don't mind my nattering on...It has really helped me to talk 'out loud' about something I try to deal with every day.

All the best to you. There will be small victories that you will see as major miracles. I hope you see some soon.

Love, Lois

Work said...

Hello,

I'm an adult with Asperger's, not officially diagnosed, as I can't afford the testing - however, I'd say give him some time with the job applications. It's especially hard starting out in college and then into a new job. I personally ended up with the job first, and then college; I always was a technology whiz, so I found some comfortable jobs working in IT as help desk. Trevor could probably find something similar, even if he's not that great with computers - I'm sure he can learn very fast, and might even find some enjoyment in it, and it means that he doesn't have to deal as much with crowds (which he will already have to do in his classes).

Anonymous said...

Bahaism is not a religion. It is a espionage organization working for Israeli Government.

Karen said...

First of all, your comment is completely off-topic for this post. Second of all, it's completely ridiculous. I was an enrolled Baha'i for 13 years, and have been an unenrolled one for 11, and I've disagreed with the Baha'i administration on several issues. But your comment is just conspiratorial thinking, on the level of those who think the U.S. government blew up the towers or the FBI assassinated Kennedy.

Baha'is engage in spiritual practices like prayer, fasting, pilgrimage, etc. That alone makes them a religion. That's why I can remain a Baha'i without being a registered member.

Midlife Mama said...

Hi Karen, My 49 year old brother was formally diagnosed with Aspberger's about 15 years ago, after going all his life being thought of as "weird" and "behaving that way on purpose to be obtuse." He, too, has had difficulty finding jobs, and if he does, holding them because employers don't have the patience to deal with him and his "difficult behavior." He freezes when put under a deadline, and there isn't a job out there that doesn't have some sort of deadline for completing tasks. It is very frustrating. I'm sure you've had him tested at Far Northern and he doesn't fit the criteria. That is too bad, because our organization has job coaching available for people with disabilities, and the job coach could help him with one-on-one assistance during the first few months on the job. Let me check into seeing whether or not he could receive job coaching services through our organization even if he isn't regional center eligible, perhaps, if you paid for it yourselves, he could be in the program. I'll look into it for you if you like. I work for Work Training Center in Chico. :)

Karen said...

Hi! Thank you so much for stopping by. I contacted the Work Training Center -- and it's pretty much a matter of either Trevor has to qualify for funding through Far Northern or we have to pay for it ourselves, which just isn't possible. We're up to our eyeballs in debt already.

We do have him signed up through the Dept. of Rehabilitation. They're going to give him paralegal training, which I think would suit his talents well. He's a very smart kid, and he has done research papers for his classes at Shasta, and has expressed an interest in law several times. It's just the social limitations which make it so hard for him.

The fear I have is that I've heard that while employers are glad to make adjustments for other disabilities, they shy away from people with Autism Spectrum disorders -- because they don't understand it. They understand blindness or being in a wheelchair, but Asperger's Syndrome is only seen as a set of strange behaviors.

I'm sorry about your brother. Trevor tends to "freeze" in social situation, but he could meet deadlines -- that is, if he didn't miss the fact that there was one, which happens. At school, he would sometimes miss or not understand important instructions. He makes solid B and C grades, but he would be an A student without his difficulties with organization.

I just signed Trevor up for bowling with Do-It Leisure now (if I remember right that's associated with WTC), even though it's a long trip to Paradise. It was hard for him, meeting new people -- he was very nervous, but we're going to keep trying.

Karen said...

Oh, and yes, we did have him tested at Far Northern a couple of years ago. After going through the whole rigamorole, I was told at the end what I was told at the beginning "We don't do Asperger's." And I hear with the state budget cuts, they are even more strict now with their criteria for help. It's outrageous, really. Trevor only needs a little bit of help, a little adjustment to fit his needs, and he could hold a job and have a life of his own. But it's just not there. The Dept. of Rehab is our only shot -- and it's a long one.

Anonymous said...

From experience in my own life I can tell you that both serotonergic drugs and trauma interfere with organizational ability. I have also noticed a difference in my ability to catch things that were pretty obvious to me after quitting. . . I could go on, but I just wanted to tell you that an herb called ashwagandha might help. It can be good for the blood sugar, too, and at the very least the stuff is pretty benign. I take it for drug damage and it also helped me to get over the fear of needles that I developed while messed up on Prozac.

J