5 y.o. son just diagnosed with mild Asperger's

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So now I'm a parent of a boy with Aspergers. We suspected he had Sensory Integration issues (irrational discomfort of any clothes with buttons, doesn't like pants with zippers, collars on shirts are often an issue), but didn't expect at all the asperger diagnosis. But, that combined with many of his behaviors, it makes sense now.

So, after the initial shock, then some basic pamphlet reading, and some more in-depth reading on line, we are starting to come to terms and feeling comfortable with all this. He's very smart, communication is fine. Some fine motor delays (although he is now an expert with LEGO, go figure). He is indeed an expert on mudflaps.

So now our question on school. He starts Kindergarten in the fall, and the doc who evaluated him will be writing up the official evaluation in the next few weeks. But she gave us the option of not specifically stating Aspergers in it, rather she would describe the behaviors that need modification (through Occupational Therapy and Psychological therapy), and mention the Sensory Integration issues. We are also recommended to have the school evaluate him, so that the OT may be done at school.

We are torn a bit on this. We are currently leaning towards not having Asperger's mentioned in the evaluation. But not for being ashamed, or wanting to avoid the label, but rather he may be better served being in Mainstream class rather than Special Ed if the school evaluates him. We will have the school evaluate him anyway, but it seems more likely he will be Special Ed if the doctors evaluation says Aspergers than if it doesn't. Depending on how Kindergarten and 1st and maybe 2nd grade go, if Special ed seems the way to go, then perhaps then will be the time to do it.

In a sense, this would be "easier" had he had a more severe case, but the fact that Aspergers is a mild disorder as it is, and my son is on the mild end of those with Aspergers, we just aren't sure what is better for him.

I guess I am looking for any experiences of those whith children who are considered mild, and their experiences with education.

Thanks!

I am glad to hear you are so centered on this. I think when we finally got the label it was a relief. It explained so many things. For us, that was at the start of 2nd grade.

On to your question.

School issues vary quite a bit by country, state, district and specific school so you will have to start with a lot of questions and investigation. At our school, all the special education children are mainstreamed, and most without aids. More severe autistic spectrum and special ed children may be given an aid, but they are still mainstreamed. Separate classes for autistic spectrum children are organized county wide and serve only those who cannot be mainstreamed in any form.

So, my son has an AS label and is "in" special education, but has been in classes with all the other children from the get go, and is currently taking advanced classes as a 6th grader (he is also GATE qualified). His services are accomplished through pull outs to support and work on special areas of need such as social skills, written communication (occupational therapy), and academic weak areas (resource learning center). We meet with the special education team to write up accommodations every year, which involve sensory mitigation, work load adjustments, and so on, based on what he needs at that point in time. In elementary school he had permission to leave the classroom as needed to escape to a quiet place, permission to shorten assignments since he has a writing co-morbid, was generally excused from assemblies due to noise issues, etc.

How your child will function in a regular school setting will depend in large part on the depth of his sensory issues and what the school is able to do to mitigate them. Some things simply cannot be changed in a public school, and the number of students in a classroom is one of them. A friend of mine at the same elementary school as my son has gone to home schooling because her son simply could not deal with the presence of other kids; the special day class for spectrum kids would not have been the answer because his academics were far too advanced, so homeschool became it (they have chosen to go through the elemantary school for this, he continues to get services and materials, etc. and is assigned to a classroom, but his IEP accommodation is to school at home - I understand most homeschool parents prefer more freedom than that). To make a long story short, you should be prepared for the possibility that "school" simply won't sit well with him regardless. But, hopefully, it will - my son has done great, for the most part, in public school by being given accommodations.

You will also want a school that welcomes AS and understands it, and has created an accepting environment for ALL children.

And more ... sigh ... this could take hours and I don't have hours. I think you've got a start above. Just stay flexible. Understand that almost every child CAN thrive in school given the "right" school, with the exception of those whose sensory issues are too extreme. Don't be afraid to keep looking for the RIGHT SCHOOL. Great schools are out there. Make sure your child is in one of them.

And the label - well, in my pragmatic view, the label is only as good or as bad as what it gets for you. Since that can vary, I can't answer for you. For my son, it's been important for the school to have it, as this gives him access to accommodations and services. But every school really is different.

Thanks so much for the responses. I haven't really talked with anyone about this yet (eeek! I need to call my parents!) other than my wife, so it is good in a kind of passive aggressive way to get some of this out here.

I'm not too worried about the school, we are essentially sending him to the public elementary school in our town. While we don't know much about the school specifically, our district is definitely one of the better ones, and one of the reasons we moved here. I don't feel the classroom or assemblies should be too much of a problem for him. I don't know the class size yet, but in structured situations he does well. Large groups at birthday parties he enjoys, but becomes a bit wild, can't focus, etc. Once removed, he becomes instantly calm. I think as long as his class size is about 20 or less, he should be fine. He is in day care now, and he thrives there, but he is only one of 11 kids. But thriving in daycare/school seems to be common with AS like he has.

My wife is a teacher, and isn't concerned so much with the school, but who specifically may be his teacher. We don't want him to be coddled by a teacher simply because he has the label, but at the same time we don't want him in situations were an IEP would be beneficial.

Anyway, thanks for everything. Over the next few weeks, we will be looking into the school a bit more, thinking about it, reading more etc. He's such a great kid. In fact, I am looking forward to when OT starts (not until April unless an earlier time opens), as I feel that will have the greatest help with many of the biggest issues we have and he has. I'll be lurking a bit here..

My son's initial diagnosis was ADHD and NVLD. We started with a 504 - coded with "other health impairment". Problems ensued and he was given an additional diagnosis of AS. He was approved for an IEP NOT because he had AS, but because of his difficulties in school. I also did not go out of my way to change his coding to autism.

I had tons of outside testing done which all said he needed o.t. and speech therapy. The school did not do this, and they won't do anything JUST because an outside professional suggests it. I had his therapy done privately through our children's hospital. The school also had my son evaluated for o.t. and speech and low and behold, found he did not need it (schools like to save $$)...and is in one of the best school districts in the u.s.

So basically, do not place to much emphasis on the label. They are aware my son has AS, but have granted his accommodations based on his needs, rather than the diagnosis. Also, it does not necessarily mean your son will be placed in special ed 40 hours a week. My son's doctors felt he needed to be placed in a self-inclusive classroom (special ed) or asperger's school. I opted to keep him in regular school so he is mainstreamed but pulled out for "special ed" help with certain classes. Now this does not mean he is in the special ed classroom when he does this, the special ed resource teacher works with him in a small group (2-1 ratio) for writing and math. He has done great with the accommodations and gets to socialize with his "nt" friends.

oh and some of his modifications are:

extended time on tests

reduced homework

scribe (when needed) - this is usually for tests

alpha smart when needed for writing (it's a word processor since he has difficulty writing out thoughts)

reduced visual stimuli on papers

priority seating in the front of the class

he is allowed to get up for a break

wiggle seat to help with attention

color coded organization folders

reduce distractions in room

noah repeats back directions

dictate when writing is not the object.

teacher cueing to stay on task.

seating so feet touch ground.

small group help for math and writing

seating so feet touch ground.

Could you elaborate on this one? lately, he can not sit at our dining room table. Lately, if he does manage to keep his butt in the chair, he swings his legs back and forth, shaking the chair and table. Otherwise he eats while standing! We keep talking about getting a stool to put his feet on while he eats, but just haven't done so. We were just thinking that he is just more comfortable with his feet firmly planted rather than swinging. But perhaps it's more than that, that with his sensory issues he has more of a "need" to have his feet down.

The car, to a lesser degree, is also an issue. One time we shoved an overnight bag by his feet, and he seemed so much less fidegty than on other long trips. Again, car rides with him are generally pleasant, but is another piece to the puzzle. So please let me know about his feet touching the ground!

my son STILL stands while he eats. he has pretty severe adhd, so when he sits at home, it's not for very long at all. he is always on the go.

they had put a foot rest under his feet, in hopes of keeping him more stable. it did not work. my son has always been on the smaller side, so we also thought this might help with his posture so he wasn't hanging off the chair.

the wiggle seat helped some..he was able to move while staying seated, and that helped with his sensory issues ie - the need to move. you might want to try one at home.

if you have any more questions, feel free to pm me. my son was diagnosed with AS when he was 8 (he will be 10 next month), but we noticed he started having issues once he started kindergarten. he is in 4th grade now.

Congratulations on getting the diagnosis, you have a very special child!

I don't know how it works in the US, but why would he be more likely to be put into Special Ed if Aspergers is mentioned in the statement?

Is it because you think the school will assume Aspergers = autism = low functioning = special ed is most appropriate placement?

Many Aspie children thrive in mainstream schooling. In fact, in many ways it can be the most beneficial placement, because of the issue of developmental delay in terms of learning about facial expressions and body language and becoming better socialised. Most 'NeuroTypical' (NT) or 'normal' children learn such things instinctively, whereas Aspies often need things explaining, but they can sometimes learn by observing, by a sense of fuzzy logic, learning by making mistakes, having them corrected, either by parents, teachers, or in fact other children, so spending their time in mainstream classes can be the most therapeutic, providing opportunities to learn by example and a kind of 'osmosis' what is and what isn't appropriate behaviour.

It may be that your child isn't suited to mainstream classes, they might cause too many frustrations and sensory issues and cause too many meltdowns, but with a bit of persistence and patience, they might work out. Personally speaking, I think it's better to try and assess how it goes, rather than start with Special Ed and try to go mainstream later, as I think that would be more difficult in terms of trying to catch up.

As for myself (I'm 39), and many others in their 20s and 30s and older who slipped through the net prior to the availability of more commonplace diagnostic services, many of us managed to survive and/or thrive through our school years in mainstream classes. I did have some behavioural problems, was a bit disruptive and naughty, but that was mostly through boredom and the teaching not being sufficiently challenging. That's also another issue relating to Special Ed. Depending whereabouts your son is on the spectrum, it might be that Special Ed classes might not be challenging enough, he might, instead, benefit from tuition aimed at gifted children. Again, only speaking of my own experiences, but in high school, there were five differently graded classes in each year and I was always in the top class, and I regularly scored the highest marks in exams of the whole year in subjects as varied as mathematics, French, Chemistry, Biology, Physics and Art, I was assessed as having an IQ of around 150 and my French teacher called my parents into school and referred them to the National Association for Gifted Children (a UK organisation).

Of course, at the other end of the scale, there are Aspie children who are lower functioning, and who have more difficulties and who would most benefit from Special Ed. It's all unique to the individual child, there isn't a one prescription fits all solution to raising or educating Aspie children.

My daughter (who's now 22), who was diagnosed as ADHD or ADD as a teenager, but whom I suspect may be Aspie or have Aspie traits, well, again, she snuck under the net as it wasn't until she was much older that I became aware of such things. Yes, she was quite obstinate and could throw some spectacular tantrums, was quite precocious and adorable in equal measure, but again, she was mainstream schooled, and did quite well.

I guess a lot of what it boils down to isn't just the behavioural issues that need addressing that will dictate the kind of education that your son gets, but also academic ability, and he's more likely to be mainstream educated if he's higher functioning and has a higher IQ and higher academic ability.

Try to resist any attempt to stereotype or make assumptions, the school may have had Aspie children before and think they know how to deal with Aspie children, but your son is an individual and may have different needs and may need to be treated differently.

Kattoo, that was a great list with all the accommodations. I'm afraid I have a horrible memory for lists and things, so I can never think of all the things that are in place, just the big ones.

Oh, my son absolutely can not sit still and his feet are never firmly planted on the ground. Everyone has just given up on it and asks him to minimize the disturbance. It is probably part of the loose joints issue / wiggly to know where his body is in the space around him thing.

I would have the report say Aspergers or see if she can write you two reports: one with the dx included and one without the dx included. You may need that dx later.

Let's say your child needs services later - three years down the road and you don't have that dx, it could be more difficult to get services your child may need without the official dx unless your child can qualify for services at that time under a different special ed category (i.e., language impaired, learning disabled, other health impaired, etc.). The school district typically does not provide the label Aspergers. Some school districts can give the educational diagnosis of autism and write in their report that aspergers is suspected and some can't. If you chose not to have that label on the report and your child needs special education services in the future, the district will just need to find another area to qualify under another category area.

A lot of parents who have a child that is considered "mild" prefer to have their child under a different category area. If your child ends up not qualifying for another category and does need some help later on, you don't want to be stuck without an official dx. I would definitely get that dx in a report, even if it's not a report you give the school. When all is said and done, the category really shouldn't dictate how much and what kind of services.

I told my son's school (he is in kindergarten) about his dx right from the start. They have been very accommodating. They are a private school. I don't know if it has actually caused them to look at him or treat him differently. I am pretty sure it has.

The teacher initially told me that if I didn't tell her about the dx, she would have never known or suspected the dx. She has since learned more and said that it has become more obvious to her now. What would have helped her more from the beginning is a report with more specific recommendations as a teacher than just the dx.

Although there are self-contained Special Ed classrooms, most Aspies are included in the regular classroom with their peers. For the majority of students eligible, special education is supposed to be a service, not a place. You will eventually find your way with what suit's your child's education needs.

Since your wife is a teacher, she will probably have more insight into what services the district is willing to provide and which ones they attempt to tie into the general curriculum for the rest of the students. The goal behind Special Education is to make access to the general curriculum available to all students.

As it was mentioned earlier, bringing the label into the open will qualify your child for services above and beyond what typical students may receive. That also goes for social service agencies and community mental health services. Say for example, if your child's school is lacking for summer services, community agenies may be able to fill the gap for things like Speech and OT.

There is a great stigma that still exists with special ed. This is unfortunate. I do believe my son has suffered due to the stigma that exists from both parents and kids. Even the most intelligent, educated parent, can be the least tolerant. I have experienced this firsthand.

Therefore, a caveat to my post, avoid special ed at all costs if you must. It will be stigmatizing.
This is the message I'm reading from most of the posters. It is true.
It is a sad state of affairs.

The truth, the real truth, is that "aspies" are not always high acheiving and fine in school. For many aspies, it is horrible and they have to be placed somewhere else, or home schooled. For others, they drop out, eventually, and they end up as under-achievers, living with parents until they are too old, suriving off disability or self-medicating.
All aspies are NOT geniuses or the Bill Gates of the world. All aspies are not gifted, high IQ, mensa kids that excel in math and science. Many are stuggling in math and academics. Many need support because they have processing issues or difficulties with attention. Their rote memories or photographic memories are limited to their own interests.

It is not a piece of cake. Sure, aspies are interesting, gifted in some areas (perhaps) and unique in their approach, but special ed for many of them allows them to attend school. This is reality. Asperger Syndrome is a severe impairment in social functioning. It is not a diagnosis that is tossed around lightly nor should it be. As much as you try to conceal their "aspie" ways and force them to be "normal" or "NT" sometimes, it backfires and they simply can not keep up. There is a broad spectrum, array of symptoms, even with aspies.

What irks me is the pressure to force our kids to be as "normal" as possible so that others will not notice. We need more tolerance, more allowances for kids that think and behave differently. Instead, the parents of apsies will avoid special ed at all costs, medicate their kids until they act as normal as possible, stop moving, start attending to task, do what it takes to normalize them.

This is a tragic truth. I am a parent that is walking against the tide, pushing for tolerance, and meeting resistance.

food for thought.

[quote="equinn"]What irks me is the pressure to force our kids to be as "normal" as possible so that others will not notice. We need more tolerance, more allowances for kids that think and behave differently. Instead, the parents of apsies will avoid special ed at all costs, medicate their kids until they act as normal as possible, stop moving, start attending to task, do what it takes to normalize them.


quote]

Great point!! Love it.
It is very hard when your child gets anxiety and depressed because s/he is different and doesn't have the culturally acceptable social norms.

I think the reason why people, in general, want to do whatever it takes to have their kids more like "normal" is because of the way they are treated by their peers and more mainstreamed society if they don't act more "normal". Teachers can teach acceptance but kids still do things behind the scenes. We don't want our kids to get anxiety or depression from being different yet, at the same time we don't want our kids to feel that who they are is not enough - we want our kids to be themselves. I honestly believe that most parents are torn on a daily basis between wanting their kids to be themselves and wanting them to be like the other kids so they will fit in and not face the scrutiny that can intensify anxiety and/or depression.

I believe that we do need to constantly reinforce in our kids that who they are is perfectly fine. My child may need special education services. We may find out that Nate's current school can't meet his needs and may need to go elsewhere - we find out wednesday. In the meantime, he is working hard. Nate was working really slowly on a math paper (just writing #s 1 - 100) and was only on #15 when all of the other kindergarten kids in the after school care were finished (4 others). Nate knows his #'s and can say them, he is just slower at writing them down. One of the kids said, "Nate, you are not done yet?" This obviously bothered Nate and you could tell his anxiety levels rose. One of the teachers went up to Nate and said to the other child, "God made us all different and special, Nate is doing it his own way!" His current school does enforce this on a daily basis. I just hope it is getting to the kids.

I also do not believe in the term "mild" which is why I usually write it the way I do. I think sometimes the more "mild" it seems, the harder it is because people may forget that there is a diagnosis that affect social functioning and can impede other areas such as processing speed as in my son's case. The school usually expects my son to act a certain why or think similar to his peers and he doesn't. They think that he understands concepts and certain social norms and get surprised when he does stuff out of the ordinary. They have to be reminded on a daily to weekly basis about his dx affects him. He often comes home with lunch not eaten or with toileting issues because they didn't remind him to go to the bathroom. When my son has those issues or has his sensory problems, they are reminded again that they need to be cognizant of it.

To OP - I know that you were saying mild aspergers to help us to help you and your child. He is NOT more likely to be in special ed with that label. I work in the special education system and have not experienced that. There are many people here, though, so perhaps others have different experiences. Actually a lot of people have experienced the opposite. A lot of things depend on the school, administeration and teacher. If it's truly a great school, that's a good thing.

If I were you, I would tell the school the dx. At least they can write up a 504 plan from the start or early on if accommodations are needed. I can tell you that in my experience, accommodations will probably be needed in some way or another. If you are not ready, just have two reports - one with the dx.