Freaked out by AS/HFA diagnosis, mixed advice

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Thanks for all the thoughtful replies.

On the shoelace front: he already has vans, and we just got him snow boots with bungie laces. I guess it's time to retrofit the sneakers with bungie laces, too.

He already has an IEP--he was having trouble writing and worked out an IEP to help with that. The principal and his teachers asked us to have the assessment by a specialist in pediatric developmental behavioral health. It was this specialist who, after a three hour assessment with a concurring opinion from a second specialist at the same practice, told me he has AS, soon to be HFA. We mentioned this to a few really good friends and they all had the same reaction: "No way!"

On the other hand, all of his teachers said, "I thought it must be something like that. He's so bright, but he's having trouble getting it out. And he struggles with anxiety/" Clearly, they are seeing something at school, that we don't see at home. The only thing we see is some motor control and sensory issues. I have been thinking he would "grow into" his body and get more physically skillful--and something similar with the sensory stuff. Then again, maybe it ain't just a river in Egypt.

If we accept reality as the school sees it, and go along with their plan, is there any downside for him?

Edited to add: I have heard privately from one person who vehemently supported the approach of the psychotherapist, indicating that the stigmatizing result of classification in the shool system can be brutal and do lasting damage. There was not a lot of detail in that communication, but it was interesting to see after unanimous public statements on this thread going the other way.

I can't tell you whether I'd go along with the school in your case or not. Maybe because my kid is so much older now that he finally has the diagnosis, I can understand why you have a serious conflict within yourself as to the validity and desirability of the diagnosis. I guess that all I can really say is look to the future. Do you see your son needing assistance through college? Does it look like he is going to need help to maintain himself in his own apartment? These are the things that I was looking at with my son's diagnosis.

My son is very friendly. It literally took us until he was nine to convince him that checkout people do NOT need to know intimate details of our life. He is very sweet, and generally works very hard for all of the people like OTs that have been involved with him. He has made a lot of progress compared to where he started at age three when he didn't even have a pincer grasp and terrible sensory issues. He has no problem with wanting to talk to other kids. What he rarely realizes is how patient the other kids are being with him. He's almost thirteen, and I am looking at where he is likely to be in a few years, and at this point he is going to need some specialized help to get him to the most independent point he can be, help that is not going to be available without a diagnosis.

I'm not sure of the downsides. Often, quirky kids will get labelled by their peers and teachers anyway, and not in a way we want. So, if you go along with a diagnosis, then at least the teachers have a label to put on behaviors and can hopefully help him manage whatever he needs to manage.

As far as supporting the approach of the psychotherapist. I would say, get another opinion if you are really not sure. Not all professionals are going to agree. What you have to decide is if he is having significant enough trouble at school that more intervention is needed. If so, then it doesn't matter the label as long as the right teachers and therapists are in play. Things become more clear as they intervene and get their heads wrapped around your child's learning style and as you spend time educating yourself about potential issues.

To the OP: you have some time on your side. Maybe suggest the school put a 504 in place for a few accomodations and see if that's all he needs - no need for a specific lable. If that doesn't work, I supose the school will again suggest an IEP. At that point, you'll know if he needs it or not.

To Momsparky: Thanks, I am looking into the issue of IEP vs. 504. You are probably saving me a big headache.

To Covuschik: Can you tell me what specific accomodations your son has particularly for slow processing? My main concern is homework. I just can't have them teach him nothing for 6 hours and then send gobs of homework home. (Maybe this is another thread) My son has a very high IQ in practically every area except processing, which is in the single digits. Unfortunately, the processing effects every subject.

Whether you should go with diagnosis and IEP or not depends on environment. I have been in places where they will do exactly what that therapist said-- imprison him with stigma and low expectations. If that were the case, I might agree with the therapist-- beat the AS traits out of him, if necessary, and then deal with the resultant mess, but for the love of God don't let him grow up seeing himself as a broken, defective, messed-up monster. That almost killed me, and I wasn't diagnosed until 19. If I'd been 9 instead, I'd be dead now.

Blaming it on the parenting and saying "Force him to overcome it" is bad advice. I tried taking this tactic with my 5-year-old, on my in-laws' adamant suggestion and the experience that I had at least being able to evade diagnosis however crazy it made me. Well, he went from being an irritating obvious Aspie to being a less irritating, less obvious Aspie with serious confidence problems and even less frustration tolerance. I'll be cleaning up that mess for a while.

I'd probably recommend the "soft option" if you can do it-- try the IEP without the diagnosis. Talk to people at school more.

And honey, there's a downside for everything. Branding, low expectations, and the stigma are real. If you are in the US, they can be a real big problem-- and being 11, one he will have to confront sooner rather than later. He's going to hear what gets said in the media and et cetera. Those have been almost fatal problems for me.

People wanting to push drugs-- some of them relatively benign, some of them heavy and dangerous-- may be an issue depending on the environment you are in. I had mental health practitioners assume I must be a dangerous, violent psycho and stuff antipsychotics down my throat to keep my quiet, despite pleading for help with learning to stand up for myself and repeatedly telling them my condition was getting worse, not better. I lost the ability to voice dissent, so it must be better, right?? YOU HAVE TO WATCH OUT FOR THAT. The world is full of people who will not accept self-advocacy from a child or a "ret*d;" a "ret*d" child is entirely up s**t creek without some "normal" person who will advocate for them.

You sound like you are already fully prepared to be his advocate. That's a HUGE HUGE HUGE HUGE ASSET. I am very proud of you.

The downside of struggling along without diagnosis, understanding, accomodations-- that can be equally destructive. I'll be in therapy for that trauma 'til I'm old and gray.

There is no "guaranteed safe option." Go slow and keep doing what you are doing. I have faith in you-- you already sound smarter than the average bear.

I think this new article by Lynne Soraya directly speaks to a lot of the issues brought up by the OP. I can personally attest that what she said is true: I spent years as an adult un-doing the harm unintentionally done to me in school. http://www.psychologytoday.com/blog/asp ... m-behavior

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To Covuschik: Can you tell me what specific accomodations your son has particularly for slow processing? My main concern is homework. I just can't have them teach him nothing for 6 hours and then send gobs of homework home. (Maybe this is another thread) My son has a very high IQ in practically every area except processing, which is in the single digits. Unfortunately, the processing effects every subject.[/quote]

We've had lots of different accommodations for this, but they all work/don't work well depending on the teacher. Our current ones are 100 % extended time for tests/homework assignments (that homework part is important), prompts/checks for being/returning to work, 1-1 with preferred staff ( our resource teacher, who rocks...). Dealing with the dysgraphia, we have a 50% reduction in longer writing assignments with some specific goals to bring that percentage up as/if he becomes more proficient typing with the NEO.


My guy is single digit for processing speed (9th) too and his working memory is 7th percentile and it really does effect every other area of academics. He was mid 90th percentile on the other half of the IQ test. Lots of scatter.

We struggle with homework too- especially math homework. Sometimes homework takes 2 hours, for 20 problems on a worksheet. They just moved on to algebra, which takes way less time, but long division/multiplication took him forever - we tried encouraging graph paper (it worked well for him, but he didn't want to use it, teacher was ok with it) and he never has enough room on the allotted space with the way he writes, so some nights he would get very frustrated. But he still works through it and gets it done. If he gets frustrated to the point where he can't work, it's ok for him to stop and turn in the homework a few days later, especially when he tells the teacher.

I thought it was really important to not just decrease the amount of homework in this case, since he was willing to put that time into it, most nights. I think he had a really important moment when he saw the results of that work - at the very end of last semester he had about 12 zero grades, for homework not turned in. Most of it had actually been turned in and graded, but the teacher hadn't recorded the grades before returning it home. He got to see his grade go from a low C to a high A (96%) in less than 24 hours.

You could just ask for less homework though, across the board, especially if he understands the concept and can show proficiency.

What do we do at home to encourage processing speed? Video games.

On downsides, this is what I see:

You are already stuck with the biggest one, the note in a medical file. We can't know for sure that it will never affect health insurance qualification, applications for certain types of jobs, etc.

Within schools and communities, how much of a stigma there might be varies widely. What I would recommend is finding out the personal experiences of families with high functioning diagnosed kids. Problem is, due to privacy, they can be difficult to find. But, with the teachers and school being as tuned in as they seem to be, those other families must exist.

My son hasn't had any issues with stigma, and that is despite a social skills class in high school that *I* find unsettling, where "student leader" seniors come in and practice with the students. And so I run into the prom queen and discover that she "knows" my son and thinks he is "really smart." My son says the group is all just awkward for everyone since they share no common interests, and he is not totally sure how useful it is, but he sees no need for me to have it yanked off his IEP, either.

In middle school and elementary, the social skills class had my son invite his own friends. Which he has. And the friends considered it a treat.

Thing is, quirky kids are going to be seen as quirky kids with a label or without a label. Since the labels are private, everyone is making their best guess anyway. If you are in an accepting community, they get by just fine. If you aren't, your child is teased with or without a label. In middle school there are good odds you'll have a period where everything is horrible socially for your son, but it has a lot more to do with being 12 than having a label (very few kids knew about my son's).

Because my son IS smart and has the test scores (if not always the grades) to back it up, NO ONE is cutting short their expectations for him, even though they have been willing to adapt to him. They have always fully expected him to go to a top college and have a solid career. If your school is talking MIT, they aren't trying to slack things off for him.

But you do have to know your school and your community.

It was, btw, my son's writing issues that drove our testing for ASD. My school would not write an IEP for the writing alone; he had to have something "on the list." So, we found something.

The workload, writing, and executive function accommodations were KEY through elementary school and middle school. We had my son programmed into a resource class instead of an elective in middle school to allow more time for typing and editing his work, as well as assistance with keeping things organized and all assignments listed. The escape clause (where he could leave the class anytime he needed to, simply by telling the teacher) was also important for him, because sometimes he just could not handle the stress. But as he has passed those hurdles, we have allowed the accommodations to drop.

He is in multiple honors classes, an honor roll student, active in all the school plays, and a Boy Scout. I don't know what "more" there could be. He is happy and he has friends. For us, the diagnosis and the IEP were ESSENTIAL to getting him to this point.

If you can have the IEP and all the accommodations without embracing the label well, then, maybe you don't have to. A label is not an end in itself, but a tool. If you have access the tools without the label, then maybe you don't need it.

NOTE that there is a writing part to the SAT, and I do not know yet what is needed to get additional time for it. Because of his physical limitations, no way can my son write that by hand in 20 minutes. For that, you might need the label, but I don't know yet.

Whatever you do, do NOT think that stronger discipline is the answer, and that is probably where I've taken issue with that therapist the strongest. It sounds to me like your son IS doing the best he can. This isn't about push harder, try harder. It is about recognizing what he needs to succeed.

--

As for the side topic on processing speed and homework, I asked and received complete discretion from the elementary school on how much of my son's homework he would do. My husband and I just cut out whole sections when we had to, black marked them off the page. We signed my son "out" after a certain amount of time. We scribed for him. Whatever it took. We were in the homework business and well able to tell what concepts my son needed practice in, and which he did not. On nights that every was flowing for him, he'd do all the work. We were constantly assessing and reassessing and adapting to the needs of the moment, trying to get him through the most possible while allowing him time to be a well-rounded individual.

The middle school wasn't so keen on giving us total discretion, but did allow us to type and scribe for him, and that saved him a lot of time. Dropping an elective and programming into resource as a study hall also helped.

While he will always be a bit slower in getting things done, now that he is in high school he has adapted. Not all the ASD kids do; some need a reduced course schedule; you have to know your child. But my son is ambitious and pretty good at managing his stress and knowing what he can handle.

All kids grow up and learn. Being ASD doesn't change that.

I still struggle with that one at 23!

^^This is very worth thinking about very carefully^^

When my son was in kindergarten, he went to a private school. Kindergarten was his second year as he went to pre-k there. To say he was a handful would be to put it ridiculously mildly. His teacher was a sweetheart, yet he brought her to tears on a regular basis. My son had this odd way of being the most endearing and the most aggravating kid, all rolled into one. He was a sensory nightmare, hyperactive beyond measure, academically advanced and nearly unable to focus at all. When she first talked to me about getting him evaluated, I shared with her my fears of having him have a label. She took a deep breath and said "Mrs. ___, he already HAS a label. I just think he'd be better off if you got him the right one." Her words have always stuck with me. I think my son is one of those kids who could easily end up as a delinquent if he didn't have the right support and understanding, but the truth is, the core of him contains no delinquency at all. But he could have ended up there easily enough.

(of course, the stupid school district told me he was "smart" and "exuberant" and closed his case right away. I had no idea what his rights were, so it was another 3 years before he finally got a diagnosis that made sense, but that is another story)

From InThisTogether

"^^This is very worth thinking about very carefully^^

When my son was in kindergarten, he went to a private school. Kindergarten was his second year as he went to pre-k there. To say he was a handful would be to put it ridiculously mildly. His teacher was a sweetheart, yet he brought her to tears on a regular basis. My son had this odd way of being the most endearing and the most aggravating kid, all rolled into one. He was a sensory nightmare, hyperactive beyond measure, academically advanced and nearly unable to focus at all. When she first talked to me about getting him evaluated, I shared with her my fears of having him have a label. She took a deep breath and said "Mrs. ___, he already HAS a label. I just think he'd be better off if you got him the right one." Her words have always stuck with me. I think my son is one of those kids who could easily end up as a delinquent if he didn't have the right support and understanding, but the truth is, the core of him contains no delinquency at all. But he could have ended up there easily enough."

I really agree with this. Labels are just a means to services but its far better to get a more clinical label than have someone attribute any of your son's struggles to his general character as a person or how he was poorly raised, which would of course be inaccurate. I too worried about the stigma of medical labels in a school file, but at the end of the day, if they get my son the help he needs so be it. Like many other posters said, even if he never got any type of label other kids and teachers would still pick up on his differences. Whether you put a name to them or not they would still be there, and you certainly don't want people making up other reasons that some things are so difficult for him or why he is different. (my favorite is when they blame the parents or say the child is lazy and could get with the program if he wanted to...not always the case) I also am not sure that I really ever agree with the denial approach, which is do not label him and just hope he can hang. It might work for some I guess but could be a disaster for others.

Facts are that everyone has weaknesses in various areas in life, whether anyone ever diagnoses a person with anything or not. You should explain this to your son as he might be old enough to understand this. Sometimes we need an explanation of the cause (even if it might not be totally accurate) to get the help we need to overcome our difficulties the best we can so we can go on to better use our other gifts and talents. This is no different for us plain old supposedly typical folks that just may not have struggled openly in school with the day to day, but struggled nonetheless for other reasons or with other things in life later on. No one is without their problems in life...some inborn, some circumstantial. In adversity lies great opportunity....that lesson seems lost on many adults who have different types of struggles later in life. If your son learns this lesson while he is young, it is one of the best life lessons he can learn. It also seems to me that having to go through the tough stuff makes people much more compassionate and understanding of others going through similar circumstances. Hence the many, many people who have helped me understand my son (and myself) better on this board.

Thanks again to everyone for the incredible wisdom you are sharing here.

I have been on a bit of an emotional roller coaster with this and the experiences and ideas you are posting are both profoundly moving and truly helpful.

I met with the psychotherapist and discussed his concerns.

He repeated his belief that classification was potentially very harmful. He also suggested that there was a complicated funding issue behind the school's push to have him diagnosed and classified--if he is classified, his supports get paid for out of a state budget, if he is not, the burden falls on the school district, already in a budget crisis. He wanted to see the child study team evaluation and the assessment results, and said he was not averse to accommodations like keyboarding or other in-class supports.

I had a long conversation with my boy tonight, and asked him about his friends.

He feels that he does not understand people. They think he is weird and he is often uncomfortable because he does not know how to respond--he has no friends at school and uses engages in solitary activity during recess. He feels that there is something different about his relationships with his friends than their relationships with others... so the whole AS idea is making more sense to me know.

I found the specialists, teachers and administrators at his school to be caring and thoughtful and as I read about what many others have gone through with unsympathetic schools, I feel profoundly grateful.

I feel like I have arrived at basecamp and I'm looking up at K-2 or Everest--or maybe I went for a little morning bodysurfing only to find myself caught in a tsunami.

Um, yeah, that is rather what it feels like. At the beginning.

ASD is very, very scary label because so few people really understand the "spectrum" part of it, and how broad that is.

And then you climb and somewhere along the way you realize there is a pretty stunning view up there, and with the right tools, the climb is quite do-able.

I have the most amazing son. I cannot imagine how dull my world would be if he was "normal." We have had years of very, very, very hard work. Tears. Everything. But there are rewards. Big ones.

As for funding and IEPs and all that ... it varies from state to state, so I won't even try.

Welcome to the team (?) The good news is, you have many footsteps to follow and many who will share the secrets of their success and many who will warn you about mistakes that have been made. You are not alone.

Thanks again to everyone.

It's a strange thing to look at everything that's going on in my boy's life through this lens. I find myself asking is this just one of those things, or is it an expression of ASD?

Over the weekend he was hanging out with friends playing video games. All good. Then the wanted to ride bikes and skateboards. I had a chat with one of his friends who had a new skateboard and our conversation went from longboard tricks to go pro videos to gliding. Aviation is a interest of mine, but not my son and he became a bit agitated when his friend and I began discussing gliding... "Dad," he said, "I don't care about that." Then they went out to ride.

Looking out window, I noticed He was having some trouble coming up the steep hill and went out to remind him he had a massive range of gears. Then he took off again. When he next came back to the house I knew something was wrong. He had an inward look and was visibly tense. He began to make an odd sort of strangled cry. I asked him what was wrong and he told me his chest was tight. Then described the symptoms of a panic attack. I asked him what was wrong and he said the gears on his new bike were too confusing.

After I hugged him for a while and got him a glass of water, he told me this happens to him in school about twice a week.

I met with his teacher this morning discuss it.

It's good not to be flying completely blind with this.

It breaks my heart to see him suffer.

Edited to fix a typo and add: the reason I don't feel like I'm flying blind is this community and Tony Attwood. Thanks.

Last edited by Adamantium on 19 Feb 2013, 10:18 pm, edited 1 time in total.