I think my son is an Aspie

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The day my son was born was the greatest day of my life. I love him more than I ever thought I could love anything, and I would do anything for him.

I realized he was really smart when he started speaking. He began early, and his vocabulary seemed to be increasing at a breakneck pace. And he started picking things up early, too. He knew all the shapes and how many sides they had before he was in preschool. We used to call him Mr Surrealism because he told the strangest jokes and laughed like crazy. He would say, "What shape is a stop sign?" and respond, "Oink." Then he'd ask, "What sounds do pigs make?" and answer "Octagon."

Nobody believed us when we told them he could read. We'd be driving along in the car, and our three year old would start reading all the signs we passed. His grandparents would say he recognized the logos from television commercials, but I didn't think that was it. I had never tried to teach him to read, but we did and still do read to him every day.

They came around when they noticed that he was reading things he couldn't have possibly seen on television, like Church marquees and street signs.

His grandpa thought he was deaf when he was younger, because he would talk to him and it seemed like he couldn't hear him. He wouldn't look at him and often didn't even respond. He still rarely makes eye contact.

The first time something seemed actually amiss was when I lost my job and we had to move in with my brother, his wife, and their two kids. The move caused him an inordinate amount of stress. It really freaked him out, to the point that we couldn't even leave him alone with my brother's family - even though we had done it before on a babysitting basis - because he would get really anxious and cry, not believing we were actually coming back. It seemed that the wholesale change in his routine and life had rocked him to his core.

We noticed that he really didn't play with his cousins so much as near them, and when he thought they were playing with things in the wrong way, he'd start hitting them. It was very stressful, and we decided that since he'd really only socialized with his parents to that point, it was a good time to get him into pre-school. We figured he'd pick up those socialization skills in that environment and catch up.

But he also couldn't pedal a bike with training wheels, hop or stand on one foot, or catch a ball very well. We thought we maybe were lazy parents, and hadn't put enough effort into teaching these things to him. We thought he'd pick up these skills, as well.

When he started preschool, there were immediate challenges. He wouldn't sit still for circle time for more than ten minutes before he'd just get up, wander off, and do something by himself. He didn't respect the boundaries of other kids or even stay in the room. He often didn't want to talk about what the teachers were talking about and instead would want to tell them all about Thomas the Tank Engine, which was pretty much the only toy/show he had any interest in at the time.

He also would have freak outs, and no one could seem to figure out why. They would have no rhyme or reason.

The teachers figured out he could read, so they put up signs like "Connor don't cross this line" or "Connor don't open this cabinet." This worked like a charm, and he never broke those rules again.

He seemed to be making progress when the principal of the preschool pulled me aside and told me he had a significant delay in some areas, and she thought it was a developmental disability. I was stunned, sent reeling, and though my mind was spinning, I tried to keep it together and talk to her about it. I didn't understand. He was so smart. I thought he was a genius, and she was shaking my image.

Through the conversation, I learned that her son was an Aspie, and I got the impression, though she didn't want to say it, that she thought my son was, too.

We took him to the local school district for testing, and I did some reading on AS while he was being evaluated. I looked on the internet, read some biographies like John Elder Robison's. Some things seemed to fit, like the narrow interests and the constant repeating of the same questions, while others didn't. For example, I got the impression that Aspies don't make a lot of facial expressions, but he is VERY expressive - smiling, laughing, etc.

The testers were taken with him, especially the fact that when they were doing the testing to see if he could name items, he was the first kid ever who when they held up a newspaper and asked him what it was, instead of saying "newspaper," he picked it up and read it to them. They said that when they showed him a globe and asked what it was, instead of saying a globe, he said "the earth." But they also had to constantly re-focus him on the task at hand.

They suggested he'd be a good fit for the special school district, and we had a meeting about determining an IEP. I had mistakenly thought he'd get some sort of diagnosis at the end of this process, but they said that's not what they did. I said, "Shouldn't we get a diagnosis before we determine an IEP?" It seemed only logical to me that before you can make a plan for how best to educate a child, you would need to know how he thinks and learns. They said a one-size-fits-all approach would be best.

I was dubious, but I figured they knew best.

So, he started kindergarten, and we got him an appointment with a psychologist. The psychologist said he was too young for a firm diagnosis, so she just called it a Pervasive Developmental Delay. Again, I asked if it might not be better to get a firm diagnosis so that we could have a better plan for his individual needs. I asked if it might not at least be a good idea to get him in to see a neurologist. She said no, and I figured she knew best, so I accepted it.

Some things went quite well in kindergarten. He seemed to be branching out into a few more interests than just Thomas the Tank Engine. He became very interested in history and geography, and within no time could name all the fifty states, their capitols, and sports teams. He could name all the presidents, his favorites (Coolidge, Jefferson, Obama), his least favorites (Wilson, George W Bush), as well as why they are his favorites, and could tell you a detailed history of various American symbols like The Liberty Bell and the Statue of Liberty. He could even pass expert level geography quizzes on the internet, putting nameless states in their proper places on a blank outline of a map of the United States. It was amazing, frankly.

He seems to be playing a little better with other kids, but he is very bossy and wants to control the play at all times, by his own rules and expectations.

Other things didn't go so well. He has great trouble writing, forming letters on the page. He'll try for a short time, and then just shut down. Usually, his way of shutting down is becoming aloof and making jokes - he was turning into the class clown. But sometimes, he would react violently, throwing fits and knocking over desks, hitting other children. He still has trouble staying focused, and is unable to sit still for extended periods.

He can be a handful at home, too. He has certain things that must be a certain way, or there is hell to pay. For example, he will not wear socks that match. He will have a complete meltdown if we can't find him any socks that do not match. He makes us unstrap and restrap (we totally gave up on the idea of laces) his shoes dozens of times a day, and we cannot figure out what is wrong with them that he needs this done.

He'll ask me the same questions over and over, and is obsessed with opposites. If I say, "I love you," instead of saying, "I love you, too," most times will ask, "Who doesn't?"

He has an imaginary friend named Joe, but woe to you if you call him imaginary - he's invisible. Whenever we tell him not to do something that he wants to do, he insists that Joe has told him he could, and will not accept that we - not Joe - are his parents.

He has a great, yet odd, imagination. He will create these amazing scenarios, but never put himself in them or create any characters - it is always some mashup of other characters and situations he loves - like Dom from The Fast and the Furious (he loves movies about cars - F&F, Smokey and the Bandit, The Cannonball Run, Dukes of Hazzard, etc and knows more about cars than practically anyone I know) hanging out with Pass and Stowe, who cast the second Liberty Bell.

I can't help but think that part of his problem in school is that he's way ahead in the things he loves and way behind in the things he doesn't, so he's either bored or frustrated at all times. This leads to behavioral problems. He comes home with these things he's supposed to read to us that are, like, "This is a dog. This is a fish. This is a cat. This is a pail," and he'll read them to us at a breakneck pace like its the stupidest thing he's ever done. Then we'll sit down to write letters and it'll take us three hours to write two sentences, spending much more time fighting and freaking out than trying to form the words.

His teacher called us and wants to have a meeting because of his behavioral issues at school, and I am at a loss. They have suggested ADD, and medication, but from what I've read on my own, this is a misdiagnosis and I don't want to dope up my kid if I can avoid it. In my mind, I feel that his lack of a diagnosis is really holding him back.

He's a great kid, really smart and affectionate. I love him with all my heart, and if he does have AS, I frankly wouldn't have it any other way. But I need to know what his challenges are so that I can have a plan for helping him rise to them. I feel that the longer we wait, the harder these challenges will be to overcome.

So, what do you think? Does he have AS? Should I insist on seeing a neurologist and getting a diagnosis? If he does have this, how can I work with his teacher to create an environment where he can excel like I know he can?

I'm lost and scared and feel all alone in this, so I can't even imagine how he must feel. It's really hard to get him to share his feelings with me, and I have no idea what's going on in his head.

Thanks in advance,
Rick Davis

Sounds like an aspie to me, though the ADD idea may be a 2nd possible diagnosis I don't get why you were told not to take your son to a neurologist? I was personally diagnosed by a psychiatrist or psychologist & rediagnosed by a developmental pediatrician by 18 mos. He DEFINITELY sounds old enough to have a disgnosis, I'd try to talk w/ his regular doctor about it & try to get referred to a specialist or therapist if you think its necessary. I actually have at least one friend (from college) who has an ADHD diagnosis but is certain he has something else too & has aspie characteristics (though he'd think I'm nuts if I suggest it ) so their are mixed syndrome cases out there.

A lot of interesting things, your son sounds pretty cool. Only way to really find out is get him evaluated, and it doesn't really hurt to have done.

Unfortunately, I am poor, and deal with "free" clinics, so I don't have as much power as I might in this. But he does have an appointment with the psychologist next month, and I think I am going to insist on a referral. This is my son, after all - I am not going to take no for an answer.

Thanks,
Rick

He is definitely the coolest person I know. I'm his biggest fan.

The school district doesn't always make diagnoses, and school district diagnoses are not necessarily the same as medical diagnoses. Is the psychologist you're seeing through the school district, or is it separate? If it is through the school district, you should try to see someone unconnected to the school district. If you are in a major metropolitan area, you may be able to see a developmental pediatrician. They are harder to find in rural areas. Whomever you see, make sure they have an understanding of autism spectrum disorders - not everyone does, including neurologists.

The psychologist might have been reluctant to give a firmer diagnosis because some psychologists use a PDD diagnosis as a transitional diagnosis until they can ascertain where on the spectrum a person might actually be. You could ask the psychologist about the reasoning for not giving a firmer diagnosis.

I think you've called it, your son is AS. Sooooo many things you wrote about struck a chord and with me. Definitely stick to your gut on the ADD and avoid medication ... AS is often misdiagnosed as ADD and even IF ADD exists as a co-morbid, medication wears off and isn't a permanent solution.

Whether or not you need a diagnosis depends on what will change if you have it. We have a tentative AS diagnosis from the school district (they don't consider themselves qualified to make an official diagnosis) and that has been enough to give us an AS IEP and all the accommodations related to AS. It has also been enough for me to do my all research and change how I deal with my son. I KNOW now he is AS, and that gets the job done. NO ONE is questioning that diagnosis at this point; my son's world accepts it and acts accordingly, which is really all he needs. I like the idea that it won't be part of his permanent medical file unless he someday chooses for it to be. But, that is because we are getting what we want from the label currently. If you aren't, you get the medical label. Just remember that outside of getting the school to adapt properly, there is no medication or treatment for AS, and no successful medical protocol. For some of the co-morbids - yes. But the AS - no, which is why you will hear so many different opinions on the value of the medical label.

AS kids commonly are advanced in some areas while really behind in others. The disparity causes all sorts of issues, including someday getting lousy grades in subjects you would have thought he'd excell in. School isn't designed for it, and that is where the IEP is supposed to come in. Here, most AS kids are education based on their strong areas to keep from getting bored, with intense help and support for the weak areas. No one is trying to get the weak areas functioning at grade level because that isn't going to happen; they need to develop in their own time and own pace. Which leaves you spending a lot of time figuring out where your child is currently so that you don't give supports for things he could challenge himself on and learn, but you don't try to force him into skills he isn't developmentally ready for because that causes stress, shut downs, and melt downs. Well, no one said it was going to be easy, but I have found that philosophy to work really, really well with my son.

Your son should be in reading groups that recognize his advanced skills. Our elementary school sets the early readers into independent study in K-3, and has them helping students who are struggling, which gives the child a wholly different kind of challenge, but most kids, and that includes AS kids, seem to rise up to it. After grade 3 things will level out more, and the advanced reading group in class should be reading things that he won't find totally beneath him, although there will still be challenges (we'll get into that when you get there).

His IEP should call for occupational therapy on the physical issues, speach for pragmatic speech issues, resource to work on the difficult skills, and meeting with a psychologist to discuss his stress and frustrations. If the school has lunch bunches available, they are wonderful. Other accommodations should include what I call an escape clause - as in the ability to leave the classroom without notice to a safe designated place if he feels a meltdown coming on, seating that allows him to squiggle and squirm, stim toys to help him stay focused, and quiet signals to let him know when he has drifted off task (similar to those signs at the preschool, but adapted to the situation - one of my son's teachers would walk over and put her hand on his shoulder until he re-focused; she'd just keep on talking to the other kids while she did it). We've had many threads here that cover these things in detail, so searching and reading back might be helpful. If the school won't do these things without a medical diagnosis of AS then, by all means, get one.

I wish you luck. It sounds like you understand your child really well. Oh, and I could totally relate to that stunned feeling the first time someone suggested AS. Society carries so many misconceptions on it, and even the medical communities understanding of it is still evolving. My son is very animated and lively, and he loves to hug, and so much more that I would have never thought from an AS child. But time has proven how well it fits, and I suspect that it will do the same with you.

The psychologist is through our local free clinic. I think you are dead-on in the second paragraph about her motivation, but I also think its time for me to firmly request an actual diagnosis. I think that is the only thing that will get his school district to stop treating this as a simple case of ADD.

Yeah, I think that's the key right there. We are working on getting an advocate to go with us to the parent/teacher conference this Friday. I think that will do a world of good, having an experienced, confident person there to help Connor get the support he needs.



Yeah, he gets sent home A LOT of writing practice pages as homework, and while I know that practice will help him improve at least a bit, I think the sheer volume of it is very daunting to him, making him not even want to get started at all.



I really want to talk to them about that on Friday. There has to be some way to keep him challenged and interested in the reading work.



That's what they're doing, except for the psychologist. That's on me. So, it looks like they have a good foundation, but they need a little direction, maybe.



These are the things I really want to find out about. Would it be out of line, do you think, for me to ask to come and observe what is going on in class - what sets him off, how they react, etc? Maybe I could hide in the closet, haha...



It doesn't feel that way, but I think in some way I am holding onto this false idea that there is some magic formula, and if I can just find it, everything will be fine. I have to accept that this is always going to be a struggle, and a constantly evolving process of finding what works for him.



Definitely. Since that first time I looked into it, I have found that it makes more and more sense.

- R

PS - By the way, I don't have a regular internet connection - I just use friends, family, and the public library. So, if anyone responds to me and I don't get back immediately, it doesn't mean I'm ignoring you.

I can lurk with my cell phone, but I can't post, so be sure I am reading your great advice, even if I don't respond right away.

Thanks.

Did your psychologist say that your son has Pervasive Developmental Delays, or Pervasive Developmental Delays-Not Otherwise Specified? PDD-NOS is an autism spectrum diagnosis (PDD by itself is not necessarily). If your school is ignoring that diagnosis, they are simply ignoring that diagnosis in favor of the ADD diagnosis. This is poor planning, mostly because what looks like ADD in a child with ASD, usually stems from something different from ADD in a child who is not on the spectrum. It needs to be approached differently. For instance, the apparently ADD behavior, in an ASD child, is often an expression of sensory overload.

Exactly. Its an oversimplification, but I think of ADD as set off internally - part of how the brain thinks; and AS inattention as set off externally - as in responsive to interest level and sensory input.

Consider that it may also be painful and exhausting, depending on the level of his co-morbid in the area. My son is one of those who will never write well, and will do work of any length by typing instead. We live in a world with that as an option, so why not go with it? It will be a few years before your son can really keyboard, however, as the fingers and hands need to grow, but that doesn't mean you can't start thinking in that direction. In the early years my son did tracking and hand exercises more than he did writing practice because those helped him delelop what he needed to write. Producing written work is still the main source of stress for him, but we get through. If he could spend his whole life dictating (which we still do in a measured way), he would, but he has accepted that it isn't practical. Sure, voice software exists, but it won't help you fill out a form any more than the keyboard will, and he already has figured that out, so I'm glad we never caved into that. Regardless, pages of writing practice is probably not the right answer here, and I would definitely talk with the school about it.



My son is different when I'm around, so direct observation was never practical for me. His teachers, thankfully, paid a lot of attention to what was going on, and we often met with the 3 of us after class and broke each incident down (on the day of the incident, based on talking with my son as I picked him up). When we did this, my son talked about how he saw it, the teacher about how she saw it, and I mediated Other days just my son and I went through that process, and I explained how the teacher most likely saw the situation - it is amazing how much an AS child at that age just doesn't have any awarness of (he usually totally misread the reason the teacher pulled his card, so just breaking it down is HUGE). I think the year we got the diagnosis was the big one for that, which was second grade. My son AND the school learned a lot from the process, so by 3rd grade he was self-mitigating really well. But, yes, you do need to figure out what the triggers are, one way or another.



All of which is why what you write leads me to believe in you. It isn't a magic formula, but you clearly are watching and listening and not trying to throw some boilerplate blanet onto the whole thing. Our kids are amazing gifts, and sometimes we just need to let ourselves enjoy that, and step away from the struggle of helping them make it in the world.

I'm not positive, but the NOS doesn't sound familiar.

I think the NOS just means "non-specificed other." OK, that can't be exactly right, but it means they are withholding a category for now. Which is what it sounds like you got, whether or not they bothered to tag on the NOS.

That's going on my list. He's actually good at the keyboard (I mean, for a six year-old), got in trouble the other day for typing the "A word" on the computer at school.



I definitely don't think we are getting enough information about what happens just before things go awry in class. We just get the results.



Indeed.

- R

That's true. She didn't give me the impression that this was the end of the diagnosing process. Do you think it would be helpful to bring in a version of what I wrote in the OP to the next psychologist appointment?

- R