Parents of kids with Aspergers, need advice please - Mothering Forums

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#1 of 7 Old 03-06-2014, 01:43 PM - Thread Starter
 
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So, we have been dealing with behavioral (and other) issues in DS (actually my step DS), now age 9, for about 3+ years now.

 

We, at first, suspected ADHD or ADD, but that didn't feel right at times and his therapist assured us he was not displaying symptoms of either. We continued to be boggled and I recently stumbled upon a video on Youtube explaining Aspergers and we're thinking maybe this MAY be what is going on. We're to the point of feel desperate for answers since we've tried therapy, socialization, working closely one-on-one, hobby-indulgence, etc.

 

I'm simply looking for a "yes, that does sound like it could be Aspergers" or "No, not really" and also, if it does - should we push for an evaluation? We are nervous to do anything that points out his "label" to him and the effect that might have. I've been researching the topic and exploring aspergersexperts.com and I know they say you have to be very careful about how you approach a kid with the topic. We don't want to tell him in a way that he will feel something is "wrong" with him :( Getting evaluated will certainly tip him off that something is up!

 

Anyway, here are his "symptoms": (fyi, he is homeschooled, so no "school issues" listed)

Ongoing:

- Obsessive behavior: will play Minecraft for hours, has literally played 8+hrs/day for the last 2-3 years. Other interests are few: My Little Ponies, Pokemon, and Plants vs Zombies. Will talk non-stop about these to anyone who will listen, regardless of whether the person he's talking to is interested or not. If they are interested (or even fake interest, he will talk for 30-40mins at least!).

- Seemingly oblivious of social norms, cues, and hints. You literally have to tell him what it is. He doesn't GET it and people often think he is just rude and disrespectful.

- Clumsy, will fall over his own feet, knock over stuff WAY more often than kids half his age, and hurts himself more often - always seems linked to "not paying attention to where I was going."

- Does NOT remember or even bother to remember household rules: no running in the house (he's over 100lbs already! and breaks stuff when he does!), no yelling indoors, wash hands before eating (actually, he will do NO personal hygiene whatsoever unless we remind him), etc.

- Seems to have no "common sense" - he's say the most confounding things...like he's not even thought about something before asking it. We thought this would improve with age, but it is not, at all!

- Obsessed with food - will sneak food, lie to get it, beg inappropriately to guests, etc. We've worked in a few nutritional directions with him to try different things to bring it home and NOTHING works. He just doesn't seem to care about eating right, healthy, or consequences to eating poorly. Only fear of parental judgement and "rules" reins him in.

- Exercises very little self-control. Seems to "forget" how to act "right" very often.

- Symptoms sometimes alleviated when exhausted from physical/social interaction (why we suspected ADHD).

- Learns fine, but in odd ways. He taught himself most math and literacy skills through Minecraft and other games).

- Makes friends easily, but takes over play/interactions and they are always ego-centric (HIS interests). Friends are never "close" - he has to ask them over and over again what their names are, etc.

- Does not handle emotions well. FREAKS out instead of just getting upset first. Goes from fine to BAWLING in 5 secs. Will cry over ridiculous things, like DH being a bit frustrated b/c he's trying to show him how to use a broom for the 20th time or put a shirt on a clothes hanger.

 

Most recently: 

- tics (singing loudly to self (same song for days), coughing, snorting) when on computer, and hand flapping/slapping them together, and swing arms around in circles (arm flapping) when talking to someone/walking around.

- We realized recently that much of his "obliviousness" seems to be linked to being "in the zone" or "in another world."

 

That's about all I can think of for now. I know there is more, but I think it should be enough to get the conversation started. Please feel free to ask questions :)

 

Thanks!!! :)


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#2 of 7 Old 03-06-2014, 01:56 PM - Thread Starter
 
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Also, from watching this (and being a teacher myself, by trade and having witnessed what he is talking about), I suspect getting an evaluation and diagnosis will not help him much anyway. If it's only to make us feel better, then it's not worth it. We certainly don't need any school boards trying to pull him into the system.

http://www.aspergerexperts2.com/video-1/?gw=youarein1277

 

What is your opinions on just following the advice of these and other similar "experts" and treating in our own ways?


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#3 of 7 Old 03-06-2014, 03:35 PM
 
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I have an 11 year old DD with Aspergers and a 9 year old DS with HFA. The "symptoms" you describe are definitely consistent with autism, but you will need a proper diagnosis as it could be other things and of course one cannot diagnose over the internet!

 

With that said, back when I first suspected my son might have autism, I read Tony Attwood's book "The Complete Guide to Asperger's Syndrome". It was an excellent read, very informative, and by the end of the book I had realized that (1) my son did not have Aspergers but was likely high-functioning autistic and (2) my daughter almost certainly had Aspergers (he has a chapter on girls and it was like he was writing about her!). So I would get my hands on a copy of that book and you will have a better idea perhaps of what is going on with your son.

 

You said you didn't see the need for diagnosis. We're homeschoolers too - my kids have only ever been to preschool - and I used to feel the same way. But getting my kids diagnosed has been life-changing for all of us in a Good Way.

 

First, by researching autism myself, meeting and talking to other parents of kids on the spectrum, I learned so much. I mean, I could describe what my kids' behaviours looked like, but I couldn't really understand the causes of those behaviours until I learned more. The various therapists my kids have worked with have taught me so much, too. I am a much better parent to them than I was before, because now I "get" what is going on for them. 

 

Also, it gave us a language around which we could talk about the kids' challenges. This is not only helpful for us to communicate with the kids, but it gave THEM a language they could use to help talk about what is going on with them. It provides a context in which "odd" behaviours make perfect sense. 

 

We are in a government funding program for homeschoolers and were able to access Special Ed funding, as well as support, which has been life-changing for both my kids. 


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#4 of 7 Old 03-06-2014, 04:03 PM
 
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I have to echo much of what Piglet said. Finding a diagnosis was helpful for our whole family in ways I hadn't expected. I also didn't want to stigmatize my DD (10 yrs old aspie) but she found labeling her differences to be a relief. She had been thinking that she was just inherently "wrong", but knowing the difficulties and advantages of Aspbergers has helped her self esteem greatly. It has also helped us find information on how to better help her, how to manage our expectations of her, and how to communicate with her & about her.

I haven't read that book, but I will check it out. Maybe it will be useful for us too. smile.gif

To answer your initial question: yes, that does sound like Aspbergers or HFA. Though obv I am not an expert and have not met your DS. I encourage you to get him evaluated. Being open with our DD worked well for us, as long as we framed it as a difference rather than a disability.

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#5 of 7 Old 03-06-2014, 09:21 PM - Thread Starter
 
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Thanks so much for the feedback! So, if it is not harmful to them to be diagnosed, then I think that is our best bet. We are in a delicate situation, however, where his mother lives in Canada, his father lives here in the states, and he (DS) goes back and forth (50/50) between them. He is not registered here for homeschooling b/c we live in NY and it's a PITA to meet regulations, but in Ontario, where his mom lives, there are no homeschool regulations. So, I'm not sure where we go from here and whether he needs to be evaluated there, here, or it doesn't matter? The other issue is that his mother will likely not want to accept that this may be the case (she has some mental/emotional disorders of her own) and will deny him evaluation for months before we can get anywhere with it. He does not have medical coverage here in the states, so will that be a problem? It sounds as if we will have to get him evaluated in Canada, right?

 

Thanks again! I will certainly look into that book!


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#6 of 7 Old 03-07-2014, 02:54 PM
 
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The medical coverage varies somewhat from province to province here in Canada, and I'm in BC not Ontario so I can only tell you how it works here. Likely there aren't huge differences, however. 

 

Here, there is no cost for assessment, but you need a referral from a pediatrician, which requires a referral from your GP (no cost for those either). After that, you go on a wait list for the test which is about a year here in BC. You can also choose to go private and pay for the assessment yourself, which costs around $3000. Our homeschool program paid for a private assessment as my son really needed to get into a Special Ed program asap. 

 

I don't know how it works in the US but if you don't have insurance you would have to pay for it privately. 

 

In terms of funding for therapies, here if you have an autism diagnosis you qualify for both provincial funding (about $6000/year) and funding through the school system if your child is enrolled (our homeschool program is run by the Ministry of Education and receives funds for Special Ed students so we get money through that as well). 

 

I say this because there are some options if you cannot get the mother on board. You could pay privately to have an assessment done, which, since it is not an invasive procedure and you are paying out of pocket, would probably not require her consent. You would have to pay for the therapies out of pocket, and I have to tell you they are not cheap, but if you have the money and getting the mum on board is an issue, the point is there is nothing stopping your and your DH from getting the info YOU need to be better able to meet his needs, and to provide HIM with the help he needs when he is in your care. 

 

I think one of the best things that came out of working with therapists was they gave ME language to explain to other family members what was going on with DS when he acted a certain way, what specific deficits and disabilities were associated with it, and this prompted a huge change in attitude from everybody. I went from the "indulgent parent" with the "bratty kid" to a hard-working mum doing the best she can for a kid who was facing challenges. 

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#7 of 7 Old 03-07-2014, 06:23 PM - Thread Starter
 
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Wow, we had no idea the Canadian system was so slow compared to the US! Here evaluations must happen 60 days from when you (the parent) request an evaluation! That's night and day. Apparently (my husband looked into it today) Ontario is worse, a 2-3 year wait!

 

We simply do not have that time so we will be looking into registering him here as a homeschooler (vs in Canada) if we can get his mother to agree. Then we are more likely to get him the help he/we need faster. Thanks so much for the info!


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