Freaked out by AS/HFA diagnosis, mixed advice

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Hi everybody,

My 11-year-old son was just diagnosed with AS.

I was really surprised by this. I found it hard to believe, but perhaps that is the result of ignorance on my part. I am studying hard, now.

He has a group of friends he really gets along well with in the neighborhood, but they don't see that at school. Are there a lot of "false positives" in AS diagnosis? He has problems working with groups at school. He has meltdowns, maybe twice a month. He has some anxiety and at times is a little obsessive. He has trouble writing and tying his shoes.

He is a great reader and conversationalist. He loves astronomy and physics. He does have some "sensory issues" --certain sounds are totally intolerable to him. He has three or four really good friends he hangs out with after school and on the weekend. He loves riding his bike, shooting video and playing Minecraft, Skyrim, Portal, TF2, etc. He has a great sense of humor.

His psychotherapist is adamant that he should not be diagnosed with aspergers, in fact he should not even have an IEP. If he can't tie his shoelaces or write fluidly, it is poor parenting that are at fault... We should ignore his sometimes debilitating anxietyand proceed as if he was not in the grip of these fearful thoughts. This therapist says we need to get him out the public schools and into a private school that will cultivate his gifts in math and science. The other issues will be resolved with discipline. He must learn to tie his shoes!

The school proposes increased support based on the recommendations of the doctor who diagnosed him with AS. If he goes in to the middle school, he will be part of a special program with unique features designed for him. They say "give him velcro shoes. these knots are not important." He will have a keyboard for essay questions, extra time on tests, a camera for taking notes...They say they see him at MIT in a few years. this sounds good to me.

The psychotherapist says he will be stigmatized and outcast and the school will imprison him in a cage of low expectation...and we should not agree to the diagnosis and reject the IEP.

While it's true that I did not see him as AS-like (maybe mostly based on erroneous preconceptions) I have been doing a lot of research to try to understand what they see... And I see a lot of myself in these descriptions. I am certainly not AS ( I think) but I may well be in the broader phenotype.

I have had several meetings with his teachers to get a deeper sense of what they see and why they were concerned. Next week I will be meeting with the psychotherapist to get a deeper look at his perspective.

If anyone here has any advice, guidance or experience that could be shared about this, I would deeply appreciate it.

-17 year old Aspie

-Still has bad handwriting

-Still types everything

-Still doesn't know how to tie his shoes

Honestly; I'd say take the IEP.

If you look through the forums more, you'll see even the undiagnosed people get into these situations; the IEPs are what help them to cope with the difficulties. There's even a chance it's already happening in some way or another.



What does "Great conversationalist" refer to? If the AS diagnosis is correct; then it's likely just going on about his interests. Basic social situations on the other hand are far more difficult. The sensory issues are also there (Perfume also isn't a good idea).

Take the IEP. While I can't tell what the correct choice would be due to not actually knowing him, I can say that from what you've said he probably does have it.

Once you take it, go from there and see if you can figure out what would help him the most.

Thanks, Zodai.

By great conversationalist, I mean we can sit and talk for a long time, with conversations that range all over the place--of course, it doesn't help (from an analytical perspective) that I share many of his interests--We talk cosmology, galactic evolution, level design in games... and spin absurd fantasies about imagined futures or alternative present realities... It's hard for me to imagine that he has a communication problem, but that may be that I don't see him in the situations where it comes out.

[edited to fix a typo]

Change psychotherapists. He doesn't know what he's talking about.



That sounds like the kind of strength that's common in AS. A nickname for many AS kids is 'little professor' for this reason.

How does he handle when people start gossiping (not necessarily mean gossip, but things like who is involved with who or whatever)? Can he follow a conversation like that as readily as he does intellectual topics?

For most people, I've noticed, they are fascinated by this stuff, and will readily memorize all sorts of details about the people they know. They can spend ages chatting about various people and their lives. I think it's because the social network is so important to human society, so you can really benefit from gathering detailed information about everyone you know.

Myself? Unless they have a disability (which is a topic that fascinates me), I tend to tune out. I find it really hard to keep track of everyone, and not just because I have prosopagnosia (face recognition issues). I don't have the interest and energy to keep track of everyone in my social environment like that.

Also, how does he react if the person he's talking to is getting bored but faking interest to not seem rude? This is something most AS people find extremely difficult to spot. Unless you outright tell me 'I've had enough of the infodump' I won't figure it out. (Incidentally, some people think this kind of blunt communication is rude, but I appreciate it because I don't get the message otherwise.)

I haven't had a chance to read all of the responses, but ditch the psychotherapist. Anyone who places fear of stigmatization over ensuring that a child's educational and developmental needs are met is prioritizing the wrong way. My son was in a private school. He is doing much better in a public one because they are able to support him in a way that the private school could not.

Oh, and BTW, my son was teased mercilessly for wearing velcro shoes. So if someone is worried about stigmatization, there are more things to worry about than the existence of a diagnosis. Plus, kids notice when another kid is different, whether or not they have an official label.

I cannot say if he has AS or not, of course, but I can tell you that I wish I wouldn't have listened to "professionals" who told me there was "nothing wrong" with my son other than being "smart" and "exuberant." They cost me a lot of time in getting him help.

How does your son do with figurative language? Figuring out idioms? Abstract language? Catching on to sarcasm? Being able to tell people's intentions? My son is 11 and I find him to be quite far behind his peers in these areas. He presents as very naive and gullible, even though he is clearly smart.

I am not qualified to say if your son has AS or not. (It sounds like he has a relatively mild case,, but I am not a doctor) Either way, I would ditch the shrink. He sounds awful--- he automatically assumes a fine motor skills issue is a parenting issue? <shakes head>

Also, depending on what is available where you are an IEP might enable you to get your son occupational therapy to help with the handwriting and shoe tying --- shoe tying is a functional issue. We get help for that with our 7 yr old. Speech will help with pragmatic issues etc. I would rather risk the label and get your son the help he needs as opposed to listening to someone who sounds like a really harsh, ridiculous person.

This jumped out at me too. Does he carry on reciprocal conversations with other people? My son can talk a lot and if the adult he is with is willing to talk about the subjects he wants to talk about then it can appear to be a "conversation" but typical conversation involves people asking each other questions and responding to them. The bit from the therapist about just needing more discipline is a HUGE red flag. The vast majority of kids who have consistent, stable adult influences in their lives do not simply need more discipline. Kids will do well if they can. If they are not doing well its most often because they are lacking a skill that they need to learn to be able to do well. This may seem like a big leap for one to make based on a few posts on an internet forum but it sounds like you have a good relationship with your son and if he knows that you want him to be able to tie his shoes, I think he would do it if he could. Do you honestly think that "better parenting" or more discipline is going to change that? Fine and large motor coordination and motor planning issues are common among kids on the spectrum.

Here's the deal, and I say this often: the diagnosis DOES NOT MATTER. What matters is WHAT YOU DO. In theory, a diagnosis is supposed to offer you information on what to do. My son sounds very similar to yours, and we equally did not believe his initial diagnosis by the school when he was in 1st grade - at the time, he was one of the more popular boys in his class, believe it or not (it even says "popular" on his assessment!) There are many ways in which he is not very impacted by the spectrum: he never lined things up, he has a "normal" voice with good prosody, he makes friends with total strangers like you wouldn't believe.

However, we decided to agree with the diagnosis once we realized that using the interventions and accommodations appropriate for a kid on the spectrum made all our lives better: his, ours, the school's. Meltdowns and anxiety were greatly reduced. We found ways to get him to complete work and to participate in household chores. We helped him figure out how to ride a bike and tie his shoes: all of these things we approached through the lens of autism, and all of them were much more successful.

There are many stickies at the top of this board; check them out and see if anything there is helpful to you. I would also recommend that you get a second opinion on the autism diagnosis from somewhere that specializes in autism, if only for your peace of mind (you're looking for a pediatric neuropsychologist or a developmental pediatrician.) It doesn't surprise me that the psychologist doesn't get it: most therapists don't deal with something as subtle and complex as autism.

(As for conversation, my son is the same - something to watch for is a pragmatic speech deficit (social speech) - for instance, does your son speak in paragraphs or long monologues? This is an indication of a possible deficit, and believe it or not, it can cause a lot of distress in articulate, well-spoken young people. However, the therapy and testing for it is usually available at school for free.)

Is there a way you could ride with a 'soft' diagnosis, maybe try the IEP and see how it works while holding off on the next step towards a more formal diagnosis?

PS I am not a parent. I am just a person who lives my life on the spectrum and I try to be a pretty good guy. Simply trying 'harder' has seldom worked for me. What has worked more often is trying things in different diagonal ways.

Lets say he doesn't have AS. What kind of psychotherapist says to "ignore his sometimes debilitating anxietyand proceed as if he was not in the grip of these fearful thoughts,"??????? I say don't go to that meeting. What's the point? He is a psychotherapist who wants to ignore your son's only psychological issue, and deny your efforts at a second opinion. He's the odd opinion out, IMHO.

As for the school, what they have suggested sounds nothing like low expectation. They think they will see him at MIT in a few years. Velcro shoes, keyboards, extra time on tests and a camera do not sound like jail. They are meant to even things up a little so your son fits in better, not as an outcast. He will be seen more as an outcast if he has shoestrings hanging out all day and gets furious if he can't finish the test in time while he knows all the answers.

Just a note, may be different in your state, but my son doesn't qualify for an IEP b/c he needs no separate kind of instruction. He would qualify for a 504 which they say would include anything an IEP would cover except special instruction. For his anxiety, consider asking for 5 mins early dismissal from classes to get through the halls to his next class. He'll wait outside that door rather than have to manage the noisy hallways. Consider having him go to bathroom in the healthroom and getting dressed for gym there too. These will all be obvious to the other kids, but other kids have these accomodations as well. It's much better than having him cast out by the other kids because of his reactions to anxiety. What counts is that he make friends with the other kids with high IQs. Just my 2 cents. I'm waiting to put my 11yo son in public high school when the other kids are a bit more settled into who they are.

Just a quick note on the shoes -- instead of Velcro, he could go with something slip-on, like Vans. So accomodating doesn't need to be stigmatizing.

This is the best, most succinct expression of how to parent a child on the autism spectrum (or be a person on it) that I have ever read.

Aann, our kids sound very similar. It took us a while to let go of things like shoe-tying and bike-riding - and one of the things that surprised us was that once we let them go, they did happen, just much later than other kids. But we also came to realize that we had to look much further into the future to decide which battles to fight. Staying in school and finding ways to stay on task even if he doesn't like the work: something he'll mirror at a job when he's an adult. Tying shoes, not so much (he can wear loafers, right?) We've got a lot of the same accommodations and they make a HUGE difference in our lives - PLUS they make it easier on the school.

PS. Aann, your school district may be messing with you a bit about the IEP/504; I know because it happened to us. If he needs help for "functional" skills like speech or OT or social skills, those should be covered under an IEP because they have to have a plan to educate him on them. The 504 thing is a dodge many schools use so they don't have to pay a team, but in my experience, the delivery of services under his 504 was pretty sloppy and depended on the individual teachers and social workers, because there weren't any checks and balances. We had a 504 from 1st grade to 4th grade, when DS suddenly fell apart - the school refused to give him an IEP until he started failing math (which is illegal - you can't refuse an IEP strictly because of academic success if there are deficits in functional skills.)

The major difference I found between the two is that there is a team setting goals for the IEP - much like your child's progress is "graded" in class, developing and improving skills is tracked under an IEP. A 504 is primarily for things that are static, like a child who needs preferential seating because their eyesight is poor, or needs to leave class early or headphones for sensory issues. 504s obviously cost less to implement because there is little oversight.

Obviously, if things are going well, you're fine to keep things as they are - but if things suddenly stop going well - see Wrightslaw and look up "functional skills" or google "functional skills IDEA." )

Your child sounds a lot like mine, and many I have heard of on these boards. I think the school has it nearly nailed, which means you are very, very lucky. My son has thrived getting the types of supports you described, and now as a sophomore no longer needs intervention. And is well on his way to a top college.

And remember, no one at a school complains when you decide to skip a support because you think your son can truly do that item without getting overly stressed. I've done it. You have to know your child, and you know him best.

As for the shoes, bungee laces that they sell for triathletes got us through the hump. A lot more cool than Velcro. My son no longer needs them; one day it just clicked.

Best of luck! I know it takes adapting to see how the label might fit, but having an IEP is like a magic tool that can put all the teachers in one room figuring out what is best for your child. Grab it.

We're a bungee lace family here too. The come in lots of cool colors and are very inexpensive. Tying shoes is overrated and wastes time. I'm considering switching my laces as well.

And another family with two really high functioning Aspie kids. The older one (12) is now in middle school, using a NEO2 for keyboarding. He just finished his second semester on the A/B honor roll (1 B each semester) in honors classes, science club geek, successfully navigating the public middle school experience.

Without the supports and understanding that an IEP and label bring, this would not be possible. He has large deficits in memory and processing speed, which are very characteristic of Aspies. He has processing based dysgraphia. He's primarily a sensory seeker, so his sensory issues are easier to compensate for, as long as he has something to touch,taste or chew. He has two friends. It would be very easy, in the wrong context, for teachers or administrators to assume that my kid was just unmotivated, underachieving, lazy, stubborn, shy or just plain weird. Or blame his behavior and lack of academic achievement on bad parenting.

Because of our school evaluation and label of Asperger's, there is concrete, usable information about why he struggles- a huge scatter on the IQ test, showing a massive processing disorder. Speech evaluations demonstrating almost no pragmatic (emotive) language. Let the school use what they know to help your kid succeed not just in spite of but because of these challenges. If you can see the deficits, you can also see the strengths. Unfortunately most teachers now have to teach to the deficits of the majority and unless pushed don't always challenge the kids who need it most. If you have an IEP, you can push for enrichment and acceleration.

If you went to a private school, they do not have to follow or implement an IEP - there might be other reasons to go that route, and you might find one that is very accommodating to your son's needs, but there is no legal requirement for them to provide any differentiation.

With our younger son (6) we were pressed by the school admins (who initially evaluated him as ASD) to not continue with this label, "Because you don't want to stigmatize him" all because he's a very compliant, social kid. Kind of an offensive thing, actually. I want his behavior understood for what it really is, not to play some kind of blame game once he has a meltdown at school (which he will....). And then of course, "Well, he does have issues with eye contact. And pragmatic language. And sensory issues. And very rigid routines......"

I don't know an eloquent way to put this, but the psychotherapist that you are seeing is either ignorant about autism or he's just an idiot. Or possibly both. If you really feel like your son needs therapy, I'd find someone else a little more understanding, educated and accepting of autism and what it really means.

A couple things I thought of after I sent my post.

The reason I used the term "nearly" with the idea of the school nailing it is because I really have no idea what "a special program with unique features designed for him" means in practice, or at that school. It does sound like they have experience with kids like him, but how much? How high achieving were those kids? Those are all questions.

Also, you should be aware that middle school usually brings out a key area of weakness for Aspies, and if you aren't prepared for it your son could get very discouraged: executive function and organizational skills. Middle school grading rubrics give far more weight to these skills than they do to mastering the material, and that is extremely frustrating for bright Aspie kids who not only have a development delay in those areas, but may actually struggle with them their whole lives. If your son really is an Aspie, this one is very likely to glare out at you next year. Consider this: my son had a perfect score on his 8th grade science achievement test, putting him in the top 1% of the population, but never earned better than a B in science in middle school, and struggled to just get that. If you see your son in that description, you will want that IEP. Not all Aspie kids have that struggle, some are obsessively organized, and many non-Aspie boys share the struggle, but it is an additional potential marker to add to the list.

I have a social son. He always had friends and he always wanted friends, and he shared enough interests with the average boy when they were all young to make it work. But careful observation showed that he wasn't the same as those kids, and the differences grew as time went on. We've been fortunate to have a community that embraces differences, and children who have been sufficiently interested in my son's creative spark to put up with some of his quirks, but my son still lacks the natural ability to read or care about what the other kids actually want or are interested in (he has learned).

Without the supports we've received in school, I really don't think my son would be where he is today as a honor roll student and leader, with a positive attitude about the world. He probably would still have shined on his PSATs, but he would have had so many frustrations and struggles that he would have stopped caring about grades (they aren't "fair"), and would have developed a very negative world view (people are "dumb and selfish"). I saw it starting to happen at various points in my son's life, and always took it as a warning sign that we needed to do more for him. Having been on these forums a long time, I've come to see how many Aspies can get by on their intelligence for a very long time, and develope many work arounds, but at some point that gap, the things they don't naturally understand, catch up with them. As parents, we want our kids to thrive, not just to get by.

Again, best of luck. No one hear can say if the diagnosis fits, but hopefully hearing our stories will get you a more clear picture. And I, too, take issue with that therapist. Sounds to me like he is looking to keep himself in business, because here is what a therapist told us when we went looking for help on an issue in 5th grade: therapy can't help with ASD, per se, just the fall outs from trying to be a square peg in a round world, or common co-morbid conditions (which my son did not have). What most ASD kids need is help with adaptive mechanisms and time to catch up on the developmental gaps. The therapist did find an group workshop for my son that ended up being a great help, but that was the end of it.

That Psychotherapist sounds kind of awful. Does this particular therapist do ASD testing? If not, I would just say, "thanks for your thoughts" and move on.

My son who is 6.5 was diagnosed at school two years ago. The supports he's had have been wonderful. He's a social, happy and very intelligent child, who, like others have said about their own, sort of blends in to the group, but when you look closely you realize that his conversations are not very reciprocal and he's not getting a lot of the social cues. He also has sensory issues that affects fine and gross motor skills. I have had doctors and nurses just say, "I don't see it!" But if you talk to ANY educator or any other parent of an Aspie who spends time with him, they all do see it.

A lot of our kids "pass" in society. But inside, they are feeling tons of anxiety about every day things. Trust me when I tell you that when we got help through the school, the meltdowns went to almost zero. My son has learned a LOT in the way of social skills, and the minor accomodations they make for him in class are essential.

Also, so glad to read about the bungee laces!! I've been wondering what we were going to do once he got a little older!! He's been asking for shoes with laces!! The ones he has now, look like he has laces, but they are just elastic.. and there is one velcro strap just at the top. And he has Vans, too.