Cultural and school issues

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Hello everyone!

I would need an advice for my son who is 4.5 yo. In short, he was evaluated with speech delays (only slight), poor fine and gross motor skills by school district services. He goes to regular day-care and had speech and other classes daily.
Now, both my spouse and I are nonnative English speakers and not that good ones imo. AS probably runs in both families and both of us probably have it. The good thing is that we definitely understand that what our son is going through. The bad thing is that we are completely unfamiliar with school system here. All that trying to make it “fun” is not helping, son doesn’t get it. Basically we managed to learn him some spelling and writing by just doing it 5 mins a day so I am wondering if all the coloring, drawing and trying to be “creative” is helping him. He ends up spending lots of time on these, for him tedious activities, and it does not prepare him for life or school anyway. We are both pretty sure that our son would have no problem is a "not-so-fun" school system that we went through (especially since they start off at 7) but this one is a big unknown. What is worse we are not familiar with it.

Also, I am not sure that we should get him officially diagnosed. From the present experience it looks just like it is piling up. It started with speech (he didn’t speak English even after 1 year spent in day care, he started when I started speaking English with him) and then they found all this silly motor stuff. Basically I am afraid that an AS diagnose would stick with him and that he may end up as a guinea pig for teachers and psychologists in school. He is different but his difference partly comes from different heritage and we saw it clearly that teachers with nonamerican upbringing “get” him better. I already know that he likes to grasp things by himself and that makes him very unsusceptible for help. I have the same problem all my life, I just need my own space and my own way, other just confuse me more.
Is it possible to avoid diagnosing AS inside public school system and would you recommend that?

Thanks.

You don't have to have him diagnosed. The school can give him services because he has motor delays, speech delays, behavior problems, learning problems, etc. He doesn't need to have a "label". Some people choose to have a clear diagnosis anyway. We chose to do it so the people in his life could understand him better. His teachers, the people that work with him, and his family. He's still the same kid we had before. I don't think it makes him a guinea pig. The kids and teachers already know there is something different about him after spending 30 minutes with him, so we're not fooling anyone by pretending there's nothing going on. He gets more specific help because of the "label".

Now, the "silly" motor delays... I would think that the coloring and drawing and being creative is intended to improve his fine motor skills. This will help him a lot when he starts writing in school. It's not going to help him learn his letters, you're right. I can't tell you what to do with the school-- if you feel he should be learning more letters, etc. maybe a change is in order. I do think a 4.5 year old should be practicing letters, numbers, etc but maybe if he's happy there and learning, doing it at home might be enough for him. I do agree that the speech delay could be because of his native language not being English, it depends on why he gets the speech. Is it that he's not speaking enough, or that his words are not clear? If his words are not clear, that is articulation issues and even if he spoke English, he would qualify for services.

Did your son have a speech delay with your native language? Finding out if he really has any language problems is complicated by the fact that he's being raised to be bilingual.

If the school knows that you are not a native English speaker, and that he learned English as a second language, they might dismiss any speech delays as a natural part of learning English later than all of the other children.

I suppose the advantage of not labelling him would be that his differences might be seen as cultural, and therefore, something to be respected. Not something to be "fixed at all cost". The areas that you're having problem with, you could assist him at home, or through other places that are available to you. The school doesn't necessarily have to find out.

Well, my main point is that his brain works differently due to genetics and that can not or should not be changed. I agree with the evaluation of speech delay and they say that english delay is only slight. He is somewhat okay with the native language, has a nice vocabulary, but repeats and formalizes a lot, reverses "you" and "I" in both. We completely disagree with motor skills evaluation. In our culture he would be just considered as a shy/quiet child. Yes, he has lower muscle tone but he can jump, throw a ball, run do all that however he doesn't understand the point of playing tag or ball throwing. He can do all the things at the playground but usually he just likes to sit on a bench. And that is the thing: I do not think they should change his natural preferences if it is not something he needs for an independent and successful life in the future.

My problem with labels is that there can be lots of them to try to make him resemble NT child but he is not NT nor he can be that. And avoiding wrong battles can speed up progress in other areas and reduces his frustration. I mentioned this to his teachers (he has teachers for both fine and gross motor skills and speech) but couldn't find a way through.

Cognitively they say he is fine.

Also he flaps a lot (he started after he entered the program), has a poor eye contact, no social skills so he would a get a diagnosis for sure.


Another thing is that both my husband and I are very atypical (found our perfect AS spots), have an unconventional lifestyle and there is a constant confusion due to this. For example he was supposed to name the objects and he didn't recognize hotdog but that simply because he never had it before. We do not care about "mothers" and "fathers" day or valentine stuff so he picks it up I guess. Now he is in daycare, he is more involved in a mainstream but still he doesn't care (just like us).

They can't change a child's natural preferences, so if he prefers to sit on a bench, he will continue to prefer that. If, however, he has core muscle deficits (for instance), this can make it difficult for him to sit properly in school, which will make learning more difficult. If he has fine motor deficits, it will be difficult for him to write, cut with scissors, etc. It is not always possible for parents to evaluate these things accurately.

While it is not important for your son to care about things like Mother's Day and Father's Day if those days are not important in your household, it is important for him to gain some appreciation for the fact that they are days that are recognized in American culture. Presumably, he will be socializing and eventually working with Americans, and he needs to be able to understand and relate to Americans. The primary difficulty that most individuals with Asperger's have as adults is social, and this affects their ability to get and keep jobs.

Your son doesn't have to think that tag (for instance) is an important game, but if he wants (some day) to have friends, it might be important for him to understand the basics of the game so that he is able to participate with other children. That doesn't mean he has to, it means he would have options. At some point, he may have a friend who sometimes wants to participate in some of these things, and he might want to do so as well, if only to be with his friend. The services he receives should be helping him to be able to have choices in his life, not to force him to become someone he is not.

Labels aren't there to make kids seem NT. I'm not sure how that would be possible... They can help with identifying strengths and weaknesses, and to be aware of issues that might come up in the future, like possible depression, etc. I guess if you are really dead set against a diagnosis, nothing anyone says is going to change that, but in my opinion, the therapies are there to improve function, period. Not to change who a child is.

Maybe I was not clear enough, I don't mind help and services (he had 3 hours daily and recently 5 h and it is almost 1.5 years now) but at this point these did not help at all. I do not mean academic stuff but kid was drawing circles without looking and even after a year could not draw anything while he can now make letters or a smiley (more complex obviously).The question is if they are having an approach that does not work for him, or social anxiety is preventing him to learn there. One thing I know for sure is that he learns in sprouts and the consistent long work is not good, he just gets lost.

In any case, thanks for your answers.

Good point, our kids learn in spurts, and often it seems like very little teaching can change that.

I don't really have an answer there.

I will share that in our school district the label was needed before our son could get accommodations and services through the school that he truly needed. His motor skill and cognitive issues have made it extremely difficult for him to learn to write, but he was and is brilliant in other areas. Having the label got him an IEP and the IEP made it clear he could create assignments on a tape recorded, dictated to us, and so on, instead of using whatever format the teacher was requiring. That has helped immensely. He has also had speech servcies to help with pragmatic language issues, which has been quite important for him. Occupational therapy has also been provided free by the school; while it's hard to know if it's made a difference, since my son's hand issues are severe, the OT has been a valuable partner in helping us devise work-arounds, etc.

What your child will need when he hits elementary school is still unknown. It will probably be OK to wait a while and get a better handle on how his differences affect his education before seeking labels and services, as long as you are comfortable he is acquiring the skills he needs most at the current time. So much of all of this is unique to each child and family; following a set formula isn't going to serve every child; do follow your instincts. Just be aware that once you do decide he needs labels and services, the process to actually get them will be long and slow - one or two years seems to be common. So don't hold out TOO long, once you realize things are headed in that direction. The one thing you don't want is for your child to get so frustrated that he tunes out.

Meanwhile, enjoy him as he is and let him learn at his own pace. Exactly what I hear you want to do, anyway. For the young ones, isn't this what they need most?

AGreed!


It seems that you have three questions or points.

1. The first point is the cultural issue. It seems you are concerned that the staff do not or won't understand the cultural differences and take that into consideration while testing or teaching your child.

2. It appears that you are concerned that they won't appreciate your child's differences and they will force him to fit into the "NT" neurotypical mold.

3. You are hesitinant about putting your child in special ed or labeling him due to the possible ramifications or consequences that may result. Also that the staff may use him as a case study to further understand AS.

To touch on point #1.
A lot of testing that psychologist and speech/language pathologists given are HIGHLY culturally based. When there is a cultural difference, they need to give that child an assessment instrument that takes the cultural difference into account. Unfortunately many language tests are based on this cultural normt. It would be far better for the speech/language pathologists to do language samples in both languages. Most staff are required to take coursework and additional training in the area of cultural awareness. Most o the time, they take workshops throughout the year. Doesn't mean they are extremely knowledgeable, but they are supposed to consider that.

2. There is a difference between preference and difficulty. If your child is having difficulty with gross motor and fine motor skills and he doesn't get early intervention, he may have a lot of difficulty later. I personally wish that I had some occupational therapy and speech therapy when I was younger. Perhaps I wouldn't have the difficulties I have now.
They shouldn't force him to do the same things other kids do such as play tag as part of a gross motor goal. They do need to work him to increase in his skills if it pertains to walking, holding stuff and balance (to name a few). Those can be safety issues when he grows up. It is not meant to make him be good at sports if that is not his goal. Same thing with fine motor skills. We all need a certain amount of skills to function in any society not just this one. Part of that is copying and cutting - stuff like that. We all have to do things we don't like to learn - it is true in any culture.

He will be required to do PE when he gets older. he may not like it as a lot of students don't. I HATED IT. I had some much anxiety to the point I wanted to through up. My coordination skills weren't the best. If he has an IEP or a 504 (accommodation) plan, they can work around that better. If he doesn't, he will get graded the same as everyone else and probably fail the class for refusal to participate. They won't accommodate him if he doesn't have IEP or 504. So, a label helps him - it doesn't hurt him. he will get extremely frustrated as he progresses in school if he is required to do the same work that other kids have to do (in writing and other fine motor things). He will essentially be required to be like an NT person.

If you don't want a goal in eye contact, you can tell the IEP team. There are some specialists who feel that is not a good goal because it is almost painful for some people to make eye contact. Furthermore, it may be harder for that individual to communicate while making eye contact. If your child has an IEP, you can tell them you don't want that goal. That is your right as a parent/

As for being unique, some of the things you mention is like me. I am considered a neurotypical meaning not AS (at least on here). I do have ADHD so I don't consider myself NT. I don't really care about some holidays either. Valentines day irritates me. I can't stand all the cutsy hearts and stuff. That is a personal preference. There are people of different religions who don't celebrate holidays such as Jehovah Witnesses. It is the schools responsibility to not force them to take part. You can do that as well if you strongly don't want your child to participate - that is regardless of disability.

3. I already mentioned a lot in #2. It is true that your child can get services if he qualifies under a different label. I agree what other people said in that the specific label will help specialists understand him. If they don't know that he has AS, then he may get into trouble for what he can't help or due to his areas of difficulty. He will go through the same disciplinary procedures as NT's. Do you want him to do that. You say that you don't want him to be forced to be like an NT but essentially that is what you would be doing if you don't want him to have services. He will be treated like an NT. He will be forced to do other things that NT's do. That is true.

He probably won't be like a guniea pig. Staff are usually at least somewhat aware of AS as they have had at least one child with it throughout the years. A lot of times, they are clueless with certain things. They don't, however, have time to treat your child like a guniea pig. Most just want to learn as much as possible If you have AS, then you would be a wonderful advocate for your child. I am a school psychologist as well as having a husband and child on the spectrum. I can tell you that most staff don't treat children with AS as experiments. If you are in a smaller school district, they may be more clueless.

A warning, however, is that there are some horrible staff out there, horrible teachers and staff. A lot of people here have had horrible experiences in the school system. I would get to know them. Ask more questions. Talk to them. That would help you to know the red flags and how to deal with them. I dont' think it has to do with whether or not your child has an IEP, it has to do with knowledge.

If the staff know your child's needs, they would be able to know which teacher to avoid for your child. You want that. You don't want your child to be put with a completely scattered teacher who has a very loud classroom. I have very long meetings at the end of the year picking out teachers for certain kids. It is a wonderful process and most schools do that.


Someone mentioned that you can have your child qualified under a different category. That is true to a point. If your child doesn't qualify under speech/language or learning disability, then he may not get services. There is a category of Developmental Disability but that only last so long (age 6 in some states, age 9 in others). A child CAN'T receive Occupational Therapy if they don't qualify under another category. It is not a stand alone service.

The label shouldn't follow him. You can now chose at anytime to remove your child from special ed. It is a new law that was recently past I think last year. the special education records are confidential BUT I would ask to check the cumulative file to make sure that special ed is not on any of those records. Those records are not as confidential - that is only if you decide to have your child in special ed and then take him out.

A lot of people here have decided to home school. There are many other people on here who are on the spectrum that wished they were homeschool. That could be an option as well. If you do that, please teach your son some adaptive skills such as daily living skills so he can be even more independent.

Thank you DW and natesmom. It was very useful to get this insight especially from a person from the other (school) side.

I think we will continue with services and probably try to get a proper DX later however I will try to convey my experiences with my son's learning so they can have better plan and methods for him.