Friday, April 2, 2010

Aspie FAQ; For Autism Awareness Day Part 3

This FAQ is in no way meant to be comprehensive, just questions that we get a lot. For more info please ask Mr. Google.

What exactly is Asperger's?

For all intents and purposes it is a form of high functioning autism.
Challenges can include:
-social difficulties (hard time empathizing or seeing others' POV, misunderstanding jokes & figures of speech, taking things absolutely literally, not being able to read all the subtle non verbal social cues that people use to communicate with each other...basically people make no sense!)
-sensory issues (may be hyper or hypo sensitive to sensory stimuli, or both, such as noises being painfully loud or recoiling from a hug because it physically hurts, or on the other side not realizing when they are ill or injured)
-poor gross and/or fine motor coordination
-rigidity (unable to deal with changes in routine)
-repetitive or perseverative behaviour (needing to talk about the same things over and over again, repetitive movements)
-difficulty regulating emotions
-executive dysfunction (unable to stay organized, follow through, or connect consequences with behaviours)

Yes, people with Aspergers and high functioning autism can talk (and most very, very well, particularly about their favourite subjects), although there are many non verbal people with Autism. Autism covers a large spectrum of needs and abilities. From the non verbal child who will always live primarily in his own world, to the brilliant Aspie scientist who is out there achieving incredible things.

No, not all autistic people (aspie, HFA or LFA) have savant abilities. There are very few Rain Man's. My sons are clever. They could tell you anything about any Star Wars Lego set ever made, but they can't memorize the phone book in a glance, and they aren't human calculators. In a noisy, crowded room they can sometimes struggle with even the most basic skills.

Yes, our children have been vaccinated. No, this didn't cause their autism. There is currently NO SCIENCE backing this cockamamie theory, and that's all I'm gonna say 'bout that.

Yes, we have tried The Diet (GFCF). *deep sigh, eye roll* I get sick of this question, although I know it is well meaning. There is no cure for autism, peoples. There just isn't. No matter what Jenny McCarthy and crew say, and if there is any sound practice out there that could benefit our sons, believe me, we either have tried or will try it. We have had to do elimination diets on our sons for legitimate allergy related reasons, and during those times of elimination there were no notable behavioral improvements when casein and gluten were removed. Due to our sons' already severely limited diets (anaphylactic allergies), it is not wise for us to avoid any food groups they are not allergic to without solid grounds. That being said we are careful with their diets, and do notice some changes with preservatives and food dyes, so these we avoid (but really so should we all). I know the GFCF diet does help some people, but it is not a cure all.

Were they premature? This is also not my fav question. I know it is just people searching for reasons, but it feels a little impertinent. My sons came on time. They were low birth weight. It was a difficult pregnancy, but there were no major birth complications. I ate well, didn't drink smoke or even have a cup of coffee during my pregnancy. I followed my Dr.s orders to the letter and was not under any unusual stress. So, I didn't do anything wrong, and no, they are not brain damaged (which I often feel is the crux of this question). Brain difference, not damaged.

But they look perfectly normal? Yeah, they do. They are gorgeous. Blonde haired, blue eyed, handsome little fellas...and your point is? *blink, blink* I think that the picture of autism that most people have in their minds is from those ruddy Autism Speaks commercials (an organization that many people in the autism community do NOT like). Like I said before it is a wide spectrum. There are LFA people who are immediately apparent as "disabled", but many, many HFA people walk amongst you undetected, except by those who know them or autism very well. It is, for the most part, an invisible difference.

But I spoke to your son and he seemed perfectly fine! We get this in reference to one of our sons, in particular. He is very high functioning. He is very bright, and almost alarmingly observant. He is already well on his way to what most adult Aspies spend their lives doing, faking his way. He can fake it. He has learned to make a little eye contact and a little small talk, and can appear like a fairly average, although somewhat formally polite 10 year old boy. BUT here's the kicker, he can only sustain this for limited periods of time, and when he is not terribly anxious or under too much sensory stress (like at school, but even there he tries his very best to keep it together). So this is a really good thing, an adaptive, helpful thing that will pave the way for adulthood success (we all learn to fake it, NT or AS, in various situations), but don't be fooled, this does not mean that he does not have Aspergers. This deliberate social acting takes a lot of work, and he may not really be absorbing what is being said to him, he's too busy with his own part in the script. He may also collapse into an earth shattering meltdown the second he gets through the door at the end of his day, because he has used up every last ounce of energy faking normal.

Which brings us to: What exactly is a meltdown? Isn't this just another word for temper tantrum (in other words spoiled kid, bad parenting)? A temper tantrum is something that any child, NT or ASD, may have, usually at a young age. It is an attempt to get what they want, a parental manipulation, a power play. With consistent parenting and a little maturity tantrums will quickly disappear (child learns they will not get toy, video game etc. through acting out, learns a different approach, no more tantrums). A meltdown can look very similar to a temper tantrum. There may be yelling, screaming, flailing, crying, harm to self or property, threats, groans etc. or it may be a withdrawal, child stops talking, can't make eye contact and retreats into themselves. But all the star charts and time outs in the world will not stop an ASD kid from having meltdowns. It is not a parenting/discipline/consistency issue. It is a sensory issue. It happens when an ASD kid has reached capacity. It can be triggered by bright lights, loud noises, uncomfortable clothing, being overloaded with verbal information, frustration, anxiety, an unexpected change in routine, an accumulation of small stresses throughout the day or any combination thereof. It is absolutely miserable for the child. They do not want to meltdown. They gain nothing from it, and often end up mortified, exhausted, in trouble and even injured. The good news is that there are many things a caregiver can do to help avoid meltdowns, like helping the child to mitigate all the sensory stresses that they are assaulted with all day long, and slowly teaching them self regulation skills. But this often takes a long time, and a completely different approaches than you would use with an NT child, and even then, on a bad day a meltdown may be unavoidable. And once it has begun it is like a runaway train, there is often nothing the child or caregiver can do to stop it, other than to keep things as quiet as possible around the child and wait until they are calm again. So the next time you see a kid freaking out at the shopping mall, and they look way too old to be exhibiting such behaviours, don't judge, and don't stare. That kid just may be on the Autism spectrum, and the caregiver is probably beyond stressed and embarrassed already, and both are doing the very best they can.

Will your son be able to go to University/work/have their own place etc. when they are adults? My sons are both very high functioning. There is no reason in the world why they shouldn't be able to do anything they want to when they grow up. They will require extra help and support along the way, and may need certain accommodations, but the sky is the limit. Perhaps no jobs involving loud noises or high stress. This is not true for every kid on the spectrum. It is a wide range.

Doesn't Bill Gates have Aspergers? I get this question a lot, and it is one of my favourites. It shows a will to connect AS with something really positive. Who could be a better role model than Bill Gates? But although there is a lot of speculation about whether or not Mr. Gates is on the spectrum (awkward social skills, single minded focus etc.), he has not "come out of the closet" as being an Aspie. There are many notable public figures on the autism spectrum, and many more historical figures who are now speculated to be. As the inspiring and fascinating Temple Grandin says, "The world needs autistic brains!"

I am once again running out of time, or as Dumbledore would say, "Time is making fools of us again." (Harry Potter special interest FTW!). But just a few more things in closing...

First of all, anyone who has stuck with me for these 3 loooOOoooong blog posts really deserves a big gold star...and a cookie. :) I really hope that by sharing our story I have given a bit of a broader view of what being on the autistic spectrum can look like.

Next, I mentionned Temple Grandin above. She is one of my heroes. Many of you may have seen the excellent movie of her life that aired recently, and if you haven't, I highly recommend. She recently gave a Ted talk. It was wonderful. I am going to embed it below for a little extra curricular learning and inspiration. She rocks!




And finally, and most importantly, I asked my sons, what they would like people to know about Aspergers and autism.

E- "That some people with Aspergers can get really stressed out if they even make one mistake. You can't just treat them the way you treat regular people. You will have to have extra patience and kindness around them."

L- "It is not a disease. It is not an illness, and it is not as bad as some people might think."

7 comments:

  1. yay! the final bits of advice from the guys will forever stay in my mind & heart. what gifts those 2 are. to us all :)
    great posts E!I do love that video too.

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  2. I saw the Temple Grandin story a while back. I can certainly say that she is a woman I won't easily forget.
    These posts are more informative that many I've read on Autism, Evangeline. I love your focus on making the world more aware of the truths and myths of Autism.
    A joyous Easter to you guys!

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  3. i've enjoyed the aspect of 'this is what it is. here's the knowledge as it pertains to us, now let's get on with it, shall we?'

    MUCH preferable to 'accept' and 'tolerate'. two grossly misused words. blech, ptui ptui.

    brava. fait accompli.

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  4. This is really informative, thank you and xoxox

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  5. Gold stars for everyone!!! And really thank you to everyone who reads. The more awareness the better for all the ASD kids out there.

    @Craig The here it is as it pertains to us and now let's get it on with it, is exactly how I feel. Like Liam said, "it's really not as bad as you might think" and so onwards and sideways we go. ;)

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  6. This is great. I know most people on the inside of the autism circle know about this, but it's for the REST of the world who doesn't get it yet. And that's why we keep talking. Thank you, Evangeline! Wonderful. And I really like the "extra patience and extra kindness." Exactly!

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  7. cookies??? there are cookies? you so should have started with that :P :P :P

    but seriously, great to put it all down like this--mayhap it will help to let new folks in the boys lives read it. who knows it might forestal folks thinking they 'know' what is what with aspies and in so doing cause more stress than needed for E & L

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