New HFA Diagnosis: Social Skills, School, Suggestions

[mymommy1]

I've posted for years about my son.  Today, I think I have a complete picture.  We had him evaluated again in January, and today got the diagnosis of HFA (Aspergers).  No real learning disabilities, though he is behind in math and writing/spelling.  His verbal comprehension and spatial reasoning are superior, but working memory and processing speed are low. 

 

The evaluator's recommendations were to explore medication to help with anxiety and go to school.  I will discuss meds and psych referrals with his doctor next week, but I don't think we are to that point yet.  I want to keep working on self-awareness, exercise, controlling environment, etc. before we use meds, I think.

 

She recommended school to help him learn social skills and have more structure, as well as get therapies that might be needed/available.  She felt that keeping him at home would increase the gap in social skills between him and other kids his age. Thoughts?  Are there others ways I could address these with him?  We aren't totally against school, but my husband who is much like my son, hated it and isn't eager to try it.

 

Finally, any advice on what to do now is helpful!

[PeterPan]

Is this the ds 11 or 7? I'm just asking, because those are different amounts of times before things come to a head. (high school)

 

Will your insurance cover access to a BCBA and getting ABA? 

 

Your person sounds anti-homeschooling. While it's fine to choose school as an option, it's HOGWASH to say you'd walk in and they'd give him all the services he needs. If just flat getting access to services is the question/goal, the key is to find out your funding options and what you can make happen. You might find you can make WAY more happen at home than what he'd get at school.

[Crimson Wife]

I've seen a ton of healthcare professionals over the years and there is definitely a "credentialism" bias in the field. Remember that these are people who've been academic overachievers in the formal education system up through graduate school. They are totally "in the box" thinkers when it comes to education. I've only encountered one provider (our pediatric neurologist) who is pro-homeschooling.

 

I do have my HFA child in PS but that is because she is highly peer-motivated. She is way more interested in copying peers than she is learning 1:1 from an adult. We have her in a special day class designed for kids with language-based LD's rather than one of the autism classes because the LBLD kids tend to be better role models wrt social interactions. She loves school and seeing her friends every day. For her, I don't think I could provide a better education at home without a budget that I don't have (no SN scholarships here in CA).

[Crimson Wife]

Also, was this a district IEP evaluator or a private one? If you haven't requested an IEP evaluation through the Child Find program, I would encourage you to do so just to find out what placement and services your district would offer. You can't make an informed decision about continuing to HS vs. putting the child into PS without knowing your options. It may well be that HSing is better for your family but you need that IEP offer to know for certain. Going through Child Find does NOT obligate you to enroll your child in PS.

[Lecka]

On social skills, I think it is very individual.

 

I think there are kids who benefit from school.

 

I think there are other kids who benefit from saving energy and then focusing on some activity where they are very likely to fit in bc of a shared interest. Not just a shared interest exactly -- but just, they want to be there, and it can go a really long way.

 

I do not believe in a blanket statement of "here is the diagnosis, now it is better for social skills to attend school."

 

But my kids go to public school, and there may be a lot of ways for your son to have a more positive experience than your husband. I don't think it is something to rule out automatically. But I don't think it is something to do automatically, either.

[Lecka]

This depends on the age too - it Is hard on my son when the group of kids in an activity changes. When there are sessions and then a lot of turnover of what kids he is around -- well that is hard.

 

But for older kids they may be a lot more consistent in certain activities.

 

So I think for an 11-year-old who liked an activity where many kids commit over time, that is different than a 7-year-old where the mix of kids might change every 2 months.

 

Another thing that can be hard -- if one day is one group of kids, and another day is a different group of kids. That can be harder for some kids. In school the kids may be more consistent that way (for my local options this is very true), and be able to know what kids they will see every day.

 

I am not sure if I am explaining that well.

 

But I think there are kids where this is just a non-issue. But it is something I see with my son. He is more flexible about it now too, and I see this as less of an issue as he gets older.

[PeterPan]

A diagnosis of ASD does *not* guarantee it would be his disabling condition in an IEP or even that he would get an IEP, believe it or not. Now maybe he would, but as Crimson says, you DON'T KNOW what services they would provide until you actually have an IEP. That process can take 120 days, or longer if things are contested.

 

Things have changed (somewhat) since your dh was in school. You might be an a district where kids get really good service. Odds are it's sort of mixed, with some kids getting good service and some kids getting nothing, absolutely nothing. In our ps district, if you walk in with ASD1 (which it sounds like is your diagnosis, did they use DSM5 and put a level?), then hang it up, NOTHING. You would get flat nothing. Seriously. And it's for real, because I know personally multiple kids with ASD diagnoses with no IEP for it.

 

But maybe your kid would get services, after you fought, after you went through everything. Or make it happen privately. Depends on your funding. 

 

My ds might do well with that herd effect, but reality is right now he does really well with his 1:1 intervention too. Our state has a terrific disability scholarship process, so that's how we do it. I have workers at our house 4 days a week, and he gets therapies, etc. It's WAY more than what the ps would provide. WAY more.

[mymommy1]

OhElizabeth, he is 11. 

 

CrimsonWife, when did your child start public school?

 

This was a private eval.  The school lady has been nice to answer my questions, so I guess I'll just call her.  Then I'll check on ABA. We don't have scholarships or such here, yet at least.

 

Are there other things that others would suggest?  He is in a non-competitive basketball right now and doing well, but it will be done at the end of the month.

[Lecka]

Things I hear good things about include Boy Scouts and martial arts.

 

If he likes animals, then animals.

 

There is golf stuff locally for his age group that I have heard good things about.

 

If you read about Aspergers sometimes there are lists for ideas

 

If there is any parent group maybe you can hear about options that have worked for others locally. There is an email list in my town that mentions things, too, and something to ask about. Generically -- when it comes up ask people "how do you find out about things" and if there is an email list or parent group -- then you can get on it, too.

 

There is a thing too (like a book lol) about how to work on some social skills through a Lego club.

 

My son did some of it at a day camp last year, with what he did they had a job for each person in the group to do while they built things. It was "that's nice" for my son but some kids really loved it.

 

Edit: with what he already does and having it go well -- I think you have a huge amount of options.

Edited February 7, 2017 by Lecka

[mymommy1]

I called the school.  It's a small district.  They do everything in the regular classroom, unless they need extra instruction on math/writing/etc.  Then that gets done at a different time in a pull-out class.  No mention of much therapy, but she did say we could start the IEP and see.  In Texas, he is supposed to learn what the other sixth graders are learning with whatever accommodations are necessary.  That means he goes from learning multidigit multiplication to whatever is in 6th grade.  Writing 5-6 word sentences to paragraphs.  Not sure that sits with me.

 

Also, I've seen him interact (or not interact) with same age kids.  Not sure that would be helpful if there isn't specific instruction in how to interact.  I don't want him to be the weird kid or bullied because of who he is.  I think I'll look into some coops or other classes that would also provide consistent kids like Lecka mentioned.  Anyone start a group for different kids?

[Crimson Wife]

TX unfortunately does not have a very good reputation for IEP services as a whole. There is a big lawsuit in the works because of caps on the number of kids receiving IEP services (totally illegal under Federal law).

 

My child started in an Early Intervention preschool at 2 years 3 months and transitioned to the school district after her 3rd birthday. She received a diagnosis of "classic" autism, moderate impairment at 2 years 10 months. Because of all the intervention we've done with her over the years she would likely now qualify as ASD Level 1 or possibly "Social Communication Disorder" + Mixed Expressive-Receptive Language Disorder if I were to bring her in for a fresh evaluation. She has fortunately responded very well to the various treatments we've done over the years.

[PeterPan]

If you go to the SocialThinking.com website, you see what materials they have and when there will be workshops near you. What you're looking for is a behaviorist (BCBA is the certified version) to get social thinking instruction. As you're finding, the school is unlikely to do it. The only way it gets added to an IEP is if they run pragmatics testing, and even then you can't assume that what they'd do would be WORTH anything. If you asked what *our* ps district does for the pullouts when they put social in the IEP, you'd conclude it was just about worthless. And if you realized that some of the people doing the pullouts have minimal training or understanding, you'd be skeptical. But some are really good! I've gone to a Social Thinking training workshop myself, and I saw a mix of people there. The mix is more where they are in learning, not so much their heart or whether they WANT to help, kwim?

 

So your best bet for like most qualified help is a BCBA. When you get that, bam, you're in with your most qualified person to get something that is worth your time. When you do a social skills group, that might be a mom who has gotten trained or might be an SLP who has gone to social thinking workshops or just bought some materials. It just varies. Cost will reflect training.

 

So then it's back to what you can make happen, what you can fund, what your insurance will pay for.

 

I haven't done age 11 with spectrum, but I think just in general that you don't have a lot of time or want to screw around. You're probably like let's get in there and accomplish something and know it was worth our time and money, kwim? So that's where I would go to the most qualified person you can find (a behaviorist or BCBA if possible) and fund what you can make happen. 

 

You can also buy the materials yourself, but a person who is more experienced, who works with a lot of autism, is going to bring a lot more to the table as far as magic in applying them. Same materials, more experienced person, will be more effective. 

 

But see what you can make happen. You can google for the BCBA site to see who is certified in your area. For me, and this is just me, working with a behaviorist has opened up my eyes to what he could do. We're pretty close to the situation, and these people know where the dc *could* be with some more intervention. And our behaviorist works a lot with homeschooled kids. So it's not like she spends all day tearing us down or saying it's a bad choice. We talk about school placement openly. However, as you say, he's not going to have more SKILLS to apply in a school setting unless you get the social thinking instruction privately. Unless your ps runs pragmatics and happens to have someone trained and is willing to put it in his IEP. But otherwise, yeah, a lot of kids will get ZILCH, even though social skills are THE determiner of employability in the long run. It's outrageous.

[Storygirl]

If you decide to go through the school evaluation process to see what they would have to offer, be sure to mark on the request form that he should be evaluated for SPEECH. This is easy to overlook, if the student has no obvious speech impairments, but that is the category that includes pragmatic language and social skills.

 

If he doesn't have learning disabilities or behavior issues that would require an aide or a behavior plan, he might still qualify for an IEP based on scores on the social/pragmatics testing. If your private evaluator ran any pragmatic tests, you can look at the scores to see if you think he's going to score low enough to maybe get social skills help at school.

 

Even if he qualifies, he may not get much help. My son's pragmatic scores were in the basement, and he only got 20 minutes three times a month of social skills help written into his IEP by the public school. I was :huh:  :confused1:  :sad: . The good news is that we don't go to the public school, but a private one, and they wanted to offer him more. So he has one period a week (about 45 minutes) of one on one with the SLP and a second period a week with a peer group (which at our small school is just one other child with social in her IEP).

 

So we have found help through the school, but it is more equivalent time-wise to private help. The SLP gets paid through our state disability scholarship program.

 

So he has to qualify for the IEP based on learning disabilities or social or behavioral or autism or other health impairment (various things fall under this). However, even if he has autism, in our state, he would not necessarily qualify as having an IEP for autism and would need to qualify under one of the other categories.

Edited February 8, 2017 by Storygirl

[City Mouse]

I tthink staring in 6th grade is going to be tough. Without any documented subject specific delays, he would be expected to do grade level work in most any state. In 6th grade that would typically be multi-paragraph essays and possibly pre-algebra type math. The fact that he does not have those skills yet, just means he would be expected to work harder to catch up.

 

Also, I don't see much social benefit in starting in middle school. In lower elem friendships are much more fluid and new kids are more easily accepted. By 6th grade (especially at a small school) social groups are already established and he may not find a "group" to belong.

[Storygirl]

DS12 does not officially have autism but nonverbal learning disorder. But, as I mentioned, he has low pragmatics. He also has learning disabilities and some other diagnoses, including ADHD.

 

We homeschooled him until he was 11, and then he started fifth grade at this private school. For him, the structure of school has been excellent, and he has really benefitted from it over all. There are aspects of the academics that have been challenging, because for the most part he is in the regular classroom, and some of the regular academics are hard for him. Things aren't tailored for his needs in the way that I could do at home (though he has many modifications and accommodations in his IEP).

 

The academic tensions cause me concern as his parent, but he doesn't care. He is not highly motivated and doesn't care about grades. That's not a good thing, of course, except that it does not cause him stress or concern. He is happy at school. For a student who desires to do well at school and will struggle to keep up, entering school when behind academically CAN cause stress (my other child with an IEP had a big emotional reaction to being behind the other students and getting low grades).

 

So you might think about your son and how he feels about academics and whether he will feel the tension and stress. This will be different for different kids.

 

For some kids, being in school CAN be good for social development, but it's common for psychologists to think that ALL kids will benefit socially from being in school. It's hard to say what will be true for your son. The social aspects of school have been interesting for my son, and I think it is beneficial for him overall because of the culture of the school that he attends. I'm really worried about the social parts of high school in a few years (this school only goes to 8th grade), but the reasons that I'm worried are specific to him and may not have any relevance for your situation.

 

It's hard to weigh things out, for sure. Being in school might be a good choice. Or it might not. There are so many variables involved, including the school itself, the intervention that is offered, and your son's needs and personality. I wish we could have someone just give us a definitive answer about these things.

 

 

[maize]

I'd be hesitant to start a socially awkward kid in school at that age--kids aged 11-14 or so can be really good at isolating and bullying un-cool kids.

 

That is not a helpful experience for anyone.

 

In considering school, you will want to find out what explicit instruction and social skills support he would receive, how proactive the school is with teaching positive social interaction skills to all the students, and exactly how bullying--especially verbal and social bullying--is handled.

 

There are social skills groups run by private therapists that might be worth looking into.

[Lecka]

Definitely there are people who set up a social group for their kids.

 

Benefits are: your house your rules, and you can structure it to work for your son.

 

You can provide food and stuff.

 

I went to a presentation including some ideas and I might have a PowerPoint that got emailed.

 

One of the points was that older or younger friends are fine if there is somebody your child hits it off with. You don't need to just look for same age if your child has an interest that trends older or younger.

 

They also said it needs to be fun or kids might not want to come back. So things like end with video game time or leave with some kind of treat.

 

But those are just things I remember. If you have some likely prospects and don't think you need to try so hard, I bet it is not necessary.

[mymommy1]

Thank you all so much for your thoughts!  After talking to the special ed coordinator, I think we will wait on PS in our current district.  There is no special group/class or social skills.  He'd have to learn the end of sixth grade, which he can do in history and science, but not math and writing.  He might get extra instruction in those areas.  He'll be thrilled about that!  He hates school even at home, ie. anything that requires writing or math.  He fights and refuses many days at home, so getting him up and into school would also be a challenge.  I love middle school kids, but I really hate to throw him into that.  Maybe at high school.

 

We are also looking at moving and considering if another district or private school could serve him better than we are at home. 

 

He is doing well with the non-competitive sports he asked to try on his own.  He is finally talking to the other boys and knows their names, so I think we will look to continue those types of activities.  I'm super excited about the Social Skills Through Legos.  I'm going to get the book and pursue that.  I know there will be interest as there are no social programs outside of schools in our town.  

 

If there are other

[Storygirl]

I'm glad you made a decision!

 

For what it's worth, I'll mention that my kids who were reluctant to listen to me as their teacher and were known to cop attitude and refuse to work for me are perfectly happy at school and participate willingly with the instruction they receive there. Sure, they complain about homework, and they have classes that are not their favorite, but their cooperation in their education has gone way up since they have been enrolled in school.

 

I'm glad it's working for them. I wish they would have worked better with me, but things are better now.

 

If you think there is a possibility of enrolling him in school when you move, you might slowly increase the writing expectations at home. Writing at school definitely can be demanding. There are people on the LC boards whose kids have trouble with writing (including mine), so if you'd like to talk in more detail about that, you could think about starting a new thread.

 

Same thing for the math problems.

 

The other thing to consider is whether to go ahead and ask your school to evaluate him, even though you don't intend to enroll him. There are benefits to having that paper trail started before he enrolls later on.

[mymommy1]

For future readers or maybe more comments, I wanted to add that part of my decision not to enroll in our current district is that it is a middle school campus with 6-8.  We have thought of moving to a district with a 5-6 campus and more support, but don't know that we can do that fast enough and with the money we have.

 

Also, because I thought of enrolling him and his brother, I gave them each a released test (STAAR in Texas).  The third grader was fine, just needs to learn about test taking.  The sixth grader (the one in question) did awesome on reading.  Math of course was low, but I don't see how a child can go in and learn without somehow covering the topics he's missed.  I'll ask on another thread about that.