And he’s almost 16 and I never knew. :smack:
For those of you who’ve been here for a while and know me, you probably remember that my youngest son has been having problems for a while now. Not only does he have some medical problems, mostly neurological, but as a teenager he also developed behavioral problems. In fact, he started to have so many problems with me that he got involved in the juvenile justice system (death threats, property damage, etc.) and is now in therapeutic foster care, working towards coming home at the end of the year. Over the years, he/we have been to countless therapists, counselors, psychiatrists, psychologists, neurologists, etc., and nobody ever mentioned that he could have any form of autism. Until a couple of months ago, that is. I took him then to a pediatric developmental specialist, and after speaking with us for over an hour, she suggested that he might be on the autism spectrum. I balked. No, I explained, I* know* him, he definitely does not have autism. He has excellent language skills! He shows appropriate (if overblown at times) emotion! He makes eye contact! Especially when I brought the questionnaire home and went through it, I thought there is no way he has this. No way.
Then today, someone posted on Facebook this article (warning: Fox News) and what what what?? This is my son. He does have repetitive hand movements (not flapping, more like conducting) and he says he can’t help it. He does obsess on certain tv shows and watches them over and over and over. He does have a LOT of problems with short-term memory loss. Almost everything about the child described in the article describes my son, except he is not savant-like in anything that I have discovered.
How does this happen, that all this time and therapies and specialists and problems go by and nobody until a couple of months ago says, hey, this is what’s wrong. What the everloving fuck??
He has an appointment in November with an autism specialist (for some reason it takes forever to get into almost any doctor around here) and we will research this further, but I am really convinced that this is what is wrong. And I only hope that this means that now there will be new information and therapies open to us that we didn’t have before, and that this will make things better, in some way. I am so glad that my friend posted that article (about her own son) and that I saw it.
Congrats? It must be a relief to finally have some sort of possible diagnosis and explanation - and incredibly frustrating that its taken so long to get one that seems to fit.
Yes, it is a huge relief. You know how you can have a big problem, and you will think about it all the time, especially like when you’re trying to sleep at night, and you turn it over and over in your mind, trying so hard to come up with this solution, or that solution, and you come up with different things but nothing ever really seems to fit or work and so you just keep trying and trying? That has been me for the last 5 years. I cannot even myself comprehend the nights kept awake, the tears shed, the miles driven, the hours spent in different offices, the intakes, the medications tried, the talking and talking and talking, the insinuations that he’s been abused, that he’s retarded, that he’s a sociopath, that he’s mentally ill, that I’m mentally ill, that I’m not doing things right, and all of it. And this is what it comes down to. This!
Which is so weird. I know a lot of people with kids that have autism. My facebook feed is constant with their posts about it. And I always felt kind of smug, like, “Well, thank og he doesn’t have that” or “I’m so glad that’s not us!” Oops.
But I am so glad to have something to research and talk to doctors about, that really does seem to fit him. I told myself in the spring when he went into foster care that by the fall, I would find out what was going on with him and what to do about it, even if I had to do it by myself with no doctors or anybody else. I was done with not only putting up with his behaviors that didn’t seem to make sense, but also not even knowing what was wrong with him or what to do about it. And then this just fell into my lap.
Sounds like you’ve really had a struggle! I had a medical mystery of my own for about 25 years and was constantly searching like you have been. I know the mix of relief and shock you’re feeling. Would be great to be able to turn back time right!
Um, welcome to the club? Having a diagnosis can be a relief, and is helpful for getting appropriate treatment. I hope this is the start of a better path for your family!
I can sorta kinda understand the missed diagnosis - autism can look like other things, particularly when a kid is pretty functional.
FTR, my son (age 19) has Asperger’s Syndrome. PM me if you want to talk about anything.
You need a professional opinion to confirm. A 5 month wait is pretty fast actually to get in for an autism specialist to do an assessment.
And probably I should say congratulations, you’re in a club you didn’t really think about ever joining but full of good people.
I’ve read your posts for years, so obviously he’s got something going on. What, not really sure. Does it matter? Only if it helps on how to reach him. “NOS” or “not otherwise specified” is a wide range within the wide range of autism.
It’s easy to miss, especially if he’s “high” functioning.
And, at least for me, I felt like the worst parent in the world (more than once) getting the diagnosis, solving behavioral problems with a simple solution (oh, the reason she was trying to sneak out of the house and run down the street because she tried but no one understood she wanted to go to Build a Bear) to not paying attention in school because the tag on her t shirt was too irritating, etc. Autism is complex. There is a lot going on.
Verbal kids on the spectrum may have it “easier” but there’s a family across the street with one parent and at least one child with Aspergers and they have a tough row to hoe.
Again, I hope the diagnosis helps with figuring out how to help your son and to get him the right services. (I won’t say the kindergarten teachers were “happy” over my daughter getting an official autism diagnosis but they were clearly excited that this meant they could tap additional and/or different budget buckets to increase support.)
Best of luck and I hope this helps on the journey.
Thanks to all for the support- not only in this thread but over the years with the pms and all of that support and advice. I may have questions to pm those of you with all of this knowledge, at some point, but I will spend the next few days researching it on my own and processing it. I appreciate all of you.
I have not checked this one but the Autism first 100 days was useful for me. Your son is high functioning so, the above link is probably more appropriate. Autism speaks is a good resource.
Reach out on line or PM.
Remember what they say “if you’ve met one person with autism, you’ve met one person with autism.” Every one is different. Rain Man and Temple Grandin are simple two (one fictional) on the spectrum. Your son is your son, and viewing him through an autism spectrum lens might help in how to reach him more effectively.
When a kid has a super-major, life-threatening problem it can be pretty easy to spot. When the disorder is subtle and the symptoms overlap normal behavior to some degree it can be missed.
It’s analogous to a kid with mild asthma who has had it all their life who’s not diagnosed with asthma until their 20’s - the kid’s been short-winded all along but because it wasn’t a big, dramatic, wheezing, scary thing with the kid turning blue in gym class the kid will be yelled at for being “lazy” when he/she can’t finish a mile run rather than something saying hey, maybe there’s a medical problem here. Then, when it’s diagnosed, people go holy crap, how can you miss asthma? In retrospect there were signs and symptoms.
It seems like every day, scientists are finding a new “warning sign” or set of indicators, or reconceptualizing just what it means to have an ASD. So please don’t feel bad for not knowing. It really is still an emerging science–this neuropsychiatry thing.
One reason why so many people go undiagnosed is that even educated practitioners can be stuck on stereotypes. This is why girls, in particular, are missed.
I have had so many missed diagnoses and misdiagnoses over the years that I am not surprised about them missing your son’s diagnosis if this is indeed what it is. I told the docs for 44 years that my problems started with a mercury accident. I was finally diagnosed and given chelation treatment in 2006 and am still getting treatment for toxic metal poisoning. However, all kinds of damage has been done.
I am telling you this because when I had my chelation IV treatments, a lot of parents brought their autistic kids in for treatments. I know they got nutrition treatments and I never asked if they also got chelation. But a lot of the mothers told me they had seen improvement in their kids’ autism. This was done by a doctor who was an MD but who also did alternative care. He was a body chemistry and nutrition expert as well and had someone reading all the latest medical literature. She pointed him to what he was interested in and so he was up on the latest medical news.
Good luck and keep us posted when he gets in to see the specialist.
This sounds a lot like my stepson, who has had a formal diagnosis of Asperger Syndrome for two years now (he is 13). Again, it’s on the autism spectrum but manifests with very different symptoms and behaviors than more profound cases of autism. If you’re anything like us, knowing was a relief (i.e. “holy shit, we aren’t alone in this! And it even has a name!”).
Also, having a formal ASD diagnosis has opened up the doors to tremendous resources within the public school system. Kidlet now has an IEP (individualized education plan) that allows for accommodations for his sensory processing issues (including headphones, taking tests alone, etc.), occupational therapy, etc. For free, or at least for the same taxes we were paying before.
If you have not already, I highly recommend you read some or all of the following:
By John Elder Robison, Look Me In The Eye and Be Different. Robison has Asperger’s, worked as a highly sought-after technician for bands like KISS and Pink Floyd, and gives a great peek into the head of someone who my be very much like your son.
By Temple Grandin, Thinking in Pictures: My Life With Autism. Again, another great peek into an autistic head. Eloquent, clear.
Also, I don’t really want to start a fight here, but let me just say that there exists a significant portion of people, both those with ASD and those who live and work with them, who do not consider Autism Speaks a very good advocate for their cause.
My son too, what a coincidence! (Typo Knig is my husband).
We were “lucky” in that Dweezil’s behavioral issues - once we saw him around other kids and realized it went well beyond the Terrible Twos into something truly clinically wrong - were pretty textbook. Once a therapist pointed us down that path, all the reading we did was one long “aha, I see that in him!” moment.
Our son is fairly high functioning, and has never had major behavioral problems once he outgrew the "Terrible Twos From Hell. Of course he has plenty of issues,
like not knowing when he’s stuck with a problem, and not asking for help.
An interesting side effect of all the reading: we saw many, many characteristics in ourselves and in my father-in-law (we really think FIL is an undiagnosed Aspie). Obviously we have managed to get along in life fairly well (FIL, not so much).
Just a random question do you the Mother have any type of autoimmune disease like Lupus or Rheumatoid Arthritis or anything like that I’ve been reading a lot about the role of autoimmune disorders in the mothers of children on the spectrum?
Well you know, with all the problem you have had with him, he hasn’t learnt not to be autistic… send him to Tai Kwon Do or something to give him something disciplined where he practices self-awareness - and Martial arts is good for training his short term memory to work… First A, then B, then C… A,B, C… John does A, James does B, I do C… all good memory excercise, he won’t know he is doing it
I would also recommend Dr. Liane Holliday-Willey’s books too. She has one called “Pretending To Be Normal” and several others too, based on her own life story. She always knew there was something different about her, but never knew exactly what until her youngest daughter, who was like her little kindred spirit almost from birth, was diagnosed with autism at about age 7 and she was too.