Not “a little Asperger-y.” Not, “maybe kinda a little on the spectrum-ish.” Real, Famous Ray’s Original, actual full-octane autism, as diagnosed by a battery of mental health professionals. We’ve more or less known for a while, but we just got the official diagnosis last week. We go back tomorrow for the second round of tests designed to test his developmental abilities and decide what sorts of services he might or might not need.
He’s in a mainstream first-grade classroom with a full-time aide. One of the manifestations for him is that he’s hyperlexic, meaning that he’s obsessed with letters and numbers and has been reading since age 1. (I know a lot of parents say this; I have an actual video of him reading out loud from Cook’s Illustrated magazine when he was age 20 months or so. He’s not comprehending all of it, but he can certainly read all of the words.) So his reading skills are off the charts. He’s great at math, too. The rest of his academics are iffy, mostly because he’s unwilling/unable to communicate enough to let us know what, if anything, he’s learned.
He has no real friends due to not being interested in other children, period. The other kids on the bus and at school seem to mostly tolerate him. Some of them are protective of him, from what I’ve seen. His teachers say he gets very occasional teasing, but nothing too much. (And to be honest, one of the silver linings of his condition is that if he does get teased, he could honestly not give two shits. The concept of “teasing” isn’t even in his mind. As far as he is concerned, other children are objects that sometimes get in your way when you are trying to walk somewhere.)
Whatsit the Youngest is a great kid, and very happy, especially if you let him play Plants vs. Zombies as much as he wants. He just… needs some extra help to get by in the world. I’m worried about him but everyone else seems pretty confident that he’ll do okay.
I’m kind of rambling. Mainly I wanted to ask if anyone can point me in the direction of some good online autism resources or message boards that aren’t infested with woo. I have done some preliminary Google searching, but after the top three or four results all turned up sites that were full of “Vaccines kill!!!” and links to Jenny ptui McCarthy, I kind of gave up in frustration.
Wrong Planet is a great website for autism spectrum folks. It was started by people on the spectrum, for people on the spectrum. But it also has lots of support for family members as well.
I have no personal experience and I hope this suggestion doesn’t sound trite or flip, but the excellent NBC series “Parenthood” has an ongoing storyline regarding a child with autism and it has been greatly praised for being very authentic and true to the struggles of families facing this challenge. The show’s creator, Jason Katims of “Friday Night Lights” acclaim, has an autistic son and writes storylines inspired by his own family’s experiences. Anyway, it could be interesting and possibly helpful - plus it’s just a great series.
Thanks; these are all helpful suggestions and comments. I haven’t watched Parenthood, but will check it out. And thanks to those of you who are PMing me, also.
I’ve read a lot about autism, Asperger Syndrome in particular.
One thing seems to stand out to me, that seems worrisome. There’s a lot of support of all kinds for autistic children (that full-time aide the OP mentions being an example). But there was nearly nothing to be found for continuing support once these children become adults and are “on their own”.
I really worry about that. (ETA: I mean, on behalf of the generic “them”, not so much on my own personal behalf.) It looks to me like autistic children (and perhaps similarly with all sorts of other disabilities) tend to just get thrown to the wolves as soon as they grow up, unless perhaps the parents are rich enough to be able to afford whatever on-going help the child needs. Government benefits seem limited (can someone tell me otherwise?) – Perhaps enough to keep the now-adult alive in some kind of warehouse institution. Not pleasant sounding.
I can only speak to the services available in Michigan. I know families and individuals that have used the Department of Human Services’ Michigan Career and Technical Institute. They have made a huge impact in their families and their adult children lives.
The internet is mostly a cesspool as far as autism is concerned. The rapid rise of autism diagnoses recently and the difficulty autistic people have self-advocating means that the discourse is mostly dominated by other people, especially parents. And those other people are very harmful as often as not. But autism self-advocacy is improving.
My favorite site these days is Left Brain Right Brain. There are many more, but seriously, don’t stay up all night reading everything you can on the internet. It’s a trap. For now it will be enough just to process this and adapt. The internet will still be there in a week or two. My son is now 3, but he was diagnosed before he turned 2. The boy still ain’t right, but aggressive early intervention and a shitload of love and attention at home have really worked wonders.
Your time will be well spent learning your rights in your state and how your bureaucracy functions. That is something we might be able to help with. I wish you the best, and please don’t hesitate to PM me for anything or if you just want to talk. Perhaps unsurprisingly given the community, there are a lot of parents with autistic children out here.
All I can say at the moment is that it is better not to even think about this right now. Worrying about what will happen to your adult autistic child is a deep, dark place. But I think the world will be very different in twenty years for autistic people.
Good friends thought their 1st born was special needs. He was, and they fought their asses off for him all through school.
This Fall, he’s on a full scholarship at a school that specializes in truly gifted students in video graphics. And colleges fought for him (yes, he’s that good).
I wish I could spell out for the OP all of the amazing triumphs ahead, but then I d have spoiler box it and ruin the very best parts of their lives as parents.
PS- the experts wanted my eldest classified as soecial needs too. My eldest, the one who has been on Deans High Honors every semester for years. The one who channels Edward from Twighlight (he’ll be so pissed if he reads that). The Blondie boy the HS girls kinda-sorta like.
Don’t be surprised, OP, if you eventually see a Wonderful Life stretching ahead for your little one.
While that’s possible, if my kid were autistic I’d want to talk about it with people, and I imagine my friends and family would get tired of it eventually. A web forum is the perfect place to bring it up.
Sorry to hear that you and your kid have that challenge to deal with, OP. At least there is better support and understanding these days than even 20 years ago.
Edit: if it’s about my terminology, that’s my reaction from years of hoping beyond hope that it was just “a little aspergers” only to find out this week that no, it’s not just a little anything and my child who I love more than anything may or may not even be able to live independently someday, we just don’t know.
Thanks for your concern or whatever that was, though.
If this thread turns into some kind of horrible flame war I’m going to ask the mods to close it. I feel posting this may have been a mistake. Thanks to those of you who have provided resources and support.
I have no advice to offer, but want to send my best wishes. You are a great, loving parent struggling with huge news. Of course you want to reach out and tap into whatever support there is. When we thought my daughter had CF, the first thing we did was reach out to support groups. Perfectly normal.
I am just here to point out facts. No flames intended. The DSM V got rid of the diagnosis of Asperger’s Syndrome, and included the symptoms of Asperger’s in the Autism Spectrum Disorder diagnosis. Thus, what your child has may have been diagnosed as Asperger’s last year, but Autism this year. We will never know what your child would have been diagnosed with. You, as I, have been blessed with a child who is an individual. His needs may be different, but the label they put on him is unimportant. My son would not interact with other children at all in Kindergarten. Now (7th grade) he occasionally remembers a girl’s name. But he can list taxonomy of sharks! Have fun, because he will never cease to amaze you.
Well, there’s always the Straight Dope Message Board
I kid (slightly) - but when my Small Boy was diagnosed a couple of years ago I got some great support and links to resources from people right here. There are masses of sane intelligent folks on this board with kids on the spectrum … China Guy, Mama Zappa, (Rushgeekgirl IIRC ?) - I really can’t remember all the names (and leaving aside a couple of ppl who don’t post here so much any more).
And of course the occasional threadshitter, but … eh. shrug
My favourite message boards are my local ones, because we can talk about resources available to us here - but that’s not much use to you. My favourite first person perspective is Congratulations, your kid is strange.
I wish you all the best. Getting the diagnosis is sucky. I have found that it got much better for us from that point on, and I hope it does for you too.
This made me laugh. Your son sounds awesome. Also thanks for the info re terminology/diagnosis.
Maybe soon I will look back on this thread and think, wow, I was overreacting. It just all feels a little overwhelming at the mo. I really appreciate all the resources people have been pointing me toward.
