Introduction and request for feedback
Hi my name is Nikki and I have a 16 year old son who has been tested several times for autism spectrum related symptoms since he was 2 years old and attending early intervention. All his teachers have agreed there is more going on than the outcome of his testing concludes. Many have agreed wholeheartedly that they believe what they are seeing is Aspergers or that at the very least he should be receiving the same services as a child somewhere on the spectrum. They have him in a special needs class that does not offer anything more than homework help. It's basically study hall. The only other service he is receiving is speech therapy. I am including a letter I just sent off to one of our county's autism specialists as a way of better explaining my frustration to all of you. Sorry if this seems strange or abrupt. Feel free to ask for any details that I have surely not covered. Thank you.
This is Nikki ----, Bobby ----'s mom. I can't remember if it was last year or the year before, but I contacted you out of desperation over finding the appropriate help for Bobby. You observed him and in your report, made many comments that strongly pointed towards him being somewhere on the autism spectrum. They instead diagnosed him with central auditory processing disorder. While I do believe this may be part of his difficulty, I do not understand why they dismissed your observations. Would it cause them more difficulty, require spending more money to serve him or? He is in Devon ---'s class, which he has a B in, but is failing 2 other classes and has D's in the other 2. No meeting was even scheduled at the beginning of the year and now, I just missed the meeting we were suppose to have last week. The notice for it came a week before and when I read it, I was also dealing with reapplying for the kids health insurance and food stamps, so I ended up spacing the date on Bobby's meeting, didn't realize it til the day after it was held. My fault. The thing is, I believe I also am dealing with some form of Aspergers or something.
When I read the detailed list of behaviors and symptoms for children, I was exactly that child! My focused obsession since I was a teen has been "what is wrong with me and how can I be more like them"? No, I did not have psychological hypochondria, I did not try to get myself labeled anything or insist on a self-diagnosis. What I did do, was read many psychology and self-help books, observe my own behaviors and their results. Through logic, I instructed myself to behave in manners that produced a positive response from others. I forced myself to start making eye contact with people I did not know or did not know well after learning others see that as a sign of dishonesty, inattention or unfriendliness. In reality, having to look at someone is a bit overwhelming and breaks my concentration, I end of hearing the drone of their voice, get kinda mesmerized then suddenly snap to, realizing I haven't heard a word they just said. Then the race is on to try and catch up and get the jist of their topic or just smile and nod (which ends up not always being appropriate if they were talking about something sad or negative) or mustering up the courage to admit I didn't hear them and ask them to repeat. As a child I sincerely wanted friends, I just seemed to always be out of sync, so I learned to gravitate almost invisibly on the periphrial of many groups. Through trial and error, I found what works to make friends. A formula that obtains the desired result. Most of these "friendships" are really just friendly acquaintances. Shallow "hey how are ya, lets do lunch sometime" interactions. Just close enough to maintain contact, but always distant enough to avoid conflict. Those who have somehow ended up closer to me have adapted to my defects. They find me eccentric, random and absurdly entertaining for the most part. They know my heart and give me undeserved grace. They love me in spite of my oddities. Those closest to me don't get eye contact, hear unfiltered comments and get told to be quiet a lot. My guard is down. Emotional extremes in others cause a panic of sorts. If you are close to me and I am mentally exhausted, I will tell you to be quiet, stop, leave me alone etc. I shut down to prevent overload. If I am trying to maintain a friendly interaction or do not know you, I will initiate the appropriate responses to diffuse the situation. Yes, I am gifted at hyper analyzing and processing a situation, most often coming to an acceptable solution. This is how I many times gain new "friends". While they are complimenting me, I am just hoping they don't see through me and get offended. They don't, but I still feel like a fraud because even though I have no evil intent or ulterior motive for negative gain, I don't think I am as genuine as they are, my reaching out was not for the same legitimate reason as theirs would be. The fact that I do care is only secondary to the fact that I don't want to fully experience their present emotion.
Wow, that was long hu? Sorry. My point was/is, if a child was diagnosed with AS, the treatment would involve social integration training, yes? The goal would be to teach them to live successfully amongst others and obtain meaningful relationships to the best of their ability. Well, what if that child wasn't diagnosed? What if there was no such thing as AS when they were growing up? What if that kid learned through their AS traits of logic, analysis and limited focus of interest how to "fix" themselves? What if many of their self-trained behaviors have become habits and a part of their automatic coping skills after years of practice? Bet on the surface, they would not appear to any longer meet the "clinical criteria" for AS. Now what might happen if this person had kids and they too had AS symptoms so obvious that people who did not even know them, but knew someone autistic, would ask if they were or suggest they be tested? If those kids were raised in a home with a more experienced person with AS who had learned ways to cope, wouldn't it be logical for these techniques to somehow rub off on them? The nature/nurture thing?
So then the kids get tested, and are said to have "flags" of autism, but not enough. They would have met the criteria for AS, but they are too friendly, too humorous, too thoughtful. "We're sorry young man, because your mom deliberately enforced social skills training on you from birth, even though you come home with tears and confusion as to why you aren't like everyone else, why you just don't get it, we can not provide assistance for you in this area, because your just not autistic enough according to our limited stereotyping test." Conclusion: If I wanted outside help, I shouldn't have done anything to get better on my own. I should have obsessed on memorizing the card catalog at the library instead of social interaction.
Part of me wants to erase this and give up again. I probably got off track, the whole intention of this was to say. Help! Time is running out. Bobby is 16, he's not going to graduate at this rate. He is NOT being served appropriately. He is going to fall through the cracks if no one saves him from this? system? I don't know. All I do know is he is a wonderful young man with great potential that seems to be slipping away. Once he is out in the real world on his own, I fear he his tenderheartedness and naivety will get him eaten alive. I fear he will be overwhelmed and may sink into a deep suicidal depression. That's no exaggeration. The only family he has is me, his brother and sister. No other family ties to look to for support. He will be at the mercy of friends and strangers. I'm just not confident that he is as resilient as I am.
I know you have your own life, I imagine your plate is full. Still I have heard you are an advocate for the underdiagnosed. Maybe at least you could point me in the direction of someone who could help. So far I have not sustained the pursuit, I keep running out of gumption, but here I am, trying again. I sure hope this email address for you is correct and doesn't get mistaken for junk. Thank you for your time Kirby. My phone number is ---- Even if you can't help or are busy right now, could you maybe, hopefully just send a short note confirming you received my email so I know it didn't get lost? Thanks in advance.