Wednesday, April 2, 2014

My own personal autism awareness wish list

Here it is, World Autism Awareness Day again.  I've been saying to myself what I say to myself every year on this date---I think I'm about as aware of autism as I can get.  However, I've been thinking about what I'd like others to know about autism.  Here's a list of the top four things I'd like the world in general to know.  It's my own personal list---I am sure that everyone with a life touched by autism has their own list, different in many ways, but I can only speak for myself.

Most autism you see portrayed in the media is high-functioning autism.

There is a huge, huge range of abilities and characteristics all lumped together as "autism".  In the past, there was actually a separate name for the highest end of autism, Aspergers Syndrome.  But the powers that be, for whatever reason, have now lumped that in with all the rest.  If you see Temple Grandin, or hear about Daryl Hannah, or even see the often hilarious Autistic Reporter on The Onion, you are seeing very, very high functioning autism.  On the other end, there are children and adults like Janey.  Janey is nine.  She is not toilet trained.  She cannot be left unsupervised for a minute.  She can talk a little, but mostly only in scripted "I want.." sentences or in repeated phrases from videos.  She screams, cries, injures herself and doesn't sleep regularly.  Academically, she functions about at a 2 year old level.  She is autism, as much as people with college degrees can be autism.

I am not looking for a cause of autism or a cure for autism.

There are many, many possible causes of autism.  Janey's autism could have been caused by any number of them.  In our daily life, it doesn't much matter what caused her to be autistic.  And in Janey's particular case, there is not going to be a cure.  I am not sure there ever is a cure for correctly diagnosed autism, but many disagree with me there, and that's fine.  However, I don't choose to pursue a cure for Janey.

Autism affects family life extremely severely.

If you've ever spent even an hour with a child with autism, especially low-functioning autism, you were probably exhausted after that hour.  Imagine that you have that child living in your house, every day, every night.  Imagine that you can never, ever count on a full night's sleep, that at any moment, your child might start screaming or crying or biting themselves or trying to bite you, and that there seems to be no reason for this behavior and no way to soothe them.  Imagine that you can never, ever count on going out in public as a family and having it go smoothly.  Imagine that even close friends who would do anything to help you have admitted they can't watch Janey, even for a few hours.  Imagine that you must sometimes make choices like whether to listen to a sibling tell you about their tough day or follow the rituals the autistic child demands, and if you pick the sibling, you know you'll be dealing with hours of screaming.  Imagine a life that autism touches every single second, every single aspect of.  That is family life with our particular brand of autism.

I love Janey more than I can possibly describe, and that guides all my decisions about her.

It is the most important thing in the world to me that Janey be loved, cared for and valued.  I make every decision about her life with that in mind.  For example, I am not sending her to summer school this year, because I am not comfortable with the program.  I need respite, but more than that, I need to know Janey is safe and loved, just as any parent has that need for their child.  In Janey's case, since she can't usefully tell me what happens when I'm not with her, I have to be ever-vigilant about who is caring for her when I am not there.  At this point, I can't compromise on this---I can't accept less when letting her out of my sight.  Maybe that is my biggest point.  There needs to be quality education, care and respite for children with autism, because they deserve it every bit as much as any child.  Without that, the burden on many families is near unbearable.

To all my friends, to all my readers, to everyone who has helped me through this life, and especially to Janey----Happy Autism Awareness Day!

7 comments:

bikermom3 said...

This is an excellent post. There are so many things wrong with how so many different disabilities are lumped together under the umbrella of autism. When a person with autism gets a college degree and is able to live independently, it is sometimes construed by people that the parents of lesser achieving autistic children have dropped the ball somewhere. I have had strangers inform me that my child could make great strides with therapy. Oh really, thanks never occurred to me. Or....you have a parent of a low functioning child age 7 who now because of changes in insurance laws is able to receive more therapy...so now this parent is thinking, with this new therapy, her child will be able to live independently and go to college at age 18. Misclassification skews expectations, it's just a mess. I hope one day it will be straightened out but we wont see it. I feel hesitant to tell people I don't believe my child will ever be able to live independently. What kind of parent am I, for giving up like that? So I keep my mouth shut. Some things you don't have to share with the world.

Heather said...

Hi Suzanne! My name is Heather and I have a quick question for you! This was such a great post. I hope to hear from you soon. :) xoxo Heather hvsj12 at gmail dot com

David Fee said...

Autism Awareness Day may as well be April Fools Day because it’s kind of a bad joke. The CDC now claims 1 in 66 kids (a 30% increase) are diagnosed with autism but there are no alarm bells going off. The public rarely sees anyone in the media that is on the 50% lower end of the autism spectrum. Like puppies or kittens, little kids with autism (like most kids) may appear cute at their age but there’s something about age and the maturing process which makes a lot of humans more uncomfortable around mentally disabled people. I don’t foresee a growing legion of aging autistic people getting more help as they get older but then again I don’t see much help now where we live. Has any mental problem really ever been cured? There are drug treatments for some diseases but real reversals? Isn’t the brain the most complex organ to figure out? The daily strain of our daughter’s autism has even affected both me and my wife’s condition in our latest medical checkups. Stress takes real toll on the body but I didn’t think it would observable on medical exams after only 1 or 2 years when we are only in our 30s and 40s. Most of our medical system is geared to saving lives and that becomes a bigger challenge as we age. More money flows to those last 6 months of life than the rest of our lives. More old folks vote and people with more severe mental problems simply aren’t a voting block worth pursuing for most politicians because the autism families aren’t from one political party or really organized enough to matter. Who out there is seeking the autistic vote?

Suzanne said...

David, I don't think anyone is seeking that vote. In fact, in the last few big state and federal elections, I wrote to the candidates and asked them to tell me what they planned to do about autism. I said I would base my vote on the answer, and would campaign for anyone with a good answer as much as possible, regardless of party or anything else. I have never gotten a single answer. I don't think autism can be cured. I think there are misdiagnosed cases that LOOK like cures, or there are very high functioning people with autism that can function in a way that most people would not SEE as autism, but I have never, ever heard of a cure I can believe in for a child like Janey. Most "cures" you read about are of very young children who I believe were misdiagnosed to start with, and had normal intelligence. The stress on caregivers is incredible, and absolutely physically as well as mentally.

Suzanne said...

Bikermom, I so much understand not telling people that you don't think your child will live independently. People often seem to think saying things like that shows giving up hope, that somehow you aren't showing the right fighting attitude, etc. I think it's being realistic---I am 99% sure Janey will never live on her own, never hold a job except maybe some very sheltered workshop type of thing. And on good days, when I accept that, it helps very much with planning her now as well as her future. For me anyway, I'd rather live in reality than think somehow at 18 Janey will be shipping off to college. It seems like it's people without much knowledge of autism that most don't want to hear that kind of thing. It's too hard for them to accept, while for us in the trenches---we have already accepted it, mostly.

Unknown said...

Great post. I agree with biker mom. The public doesn't seem to understand that autistic children Grow up! And believe it or not their not all in college, driving and living the American dream. No the media needs to see autism in all situations. You think watching a child with autism meltdown in a public area is hard to watch, try watching a grown adult have a very child like tantrum, on the floor stomping their feet and screeching including spitting at you. I think that's the biggest thing that gets me. Is the lack of awareness in adults and what happens after the cute child years pass by. After high school is day programs which is basically like adult babysitting except abuse goes on undetected a lot more then people think and there's not many individuals signing up to change adult diapers either let me tell you!

Angela Conrad said...

I loved your post! It is what I think daily! It inspired me to talk about it on my blog. What the media needs to see is how our poor children really act. If you go to my blog and click on my "meltdown" post, that video is what I go through daily.
I love your blog. It makes me feel not so alone.