Monday, May 15, 2006

AUTISM EVERY DAY

I have never felt that autism is a “living hell;” rather, I think of it as a system of challenges, deficits, and threats to independent living that must be overcome. And overcoming them is imperative.

I must emphasize, though, that I can only speak to the experiences of my family in saying that. Just as the clinical picture for autism encompasses a spectrum that each child falls on differently, so does the impact of autism on individual families run across a spectrum. I am aware of some people that do not perceive autism as a threat at all. On the other hand, the challenges of autism can be overwhelming in more severe cases.

It’s not just the child who gets autism; it’s the whole family. And the family is autistic all day, every day.

Divorce rates among the autism community are high; financial problems are rampant (even in states where health insurance is legally required to cover autism, getting the insurer to pay for even mainstream therapies other than Ritalin is near impossible); and the worry about an autistic child’s future never goes away.

As I said before, autism is not viewed as a “living hell” in the Rankin household, but neither is it a cause for celebration. It dominates our lives. It keeps us up at night. It redirects resources. What partly gets us through each and every day is our sense of purpose, and the willingness my wife and I have to share responsibilities. But the other thing that keeps us going is the progress we see our son make, we believe as a result of the hard work we put in, always keeping him as our top priority. It gives us hope for his future.

Not every family is as lucky as we have been. Considering as bad as things seem for us sometimes, that thought frightens me. Sometimes autism is so profound that hope becomes a scarce and precious commodity.

Autism Speaks recently produced a 13-minute video showing the impact autism has had on four families. It is disturbing, mainly because it is real. It’s called Autism Every Day, and it should be seen by every adult who does not have an autistic child. The next time someone asks you how many three-pointers your autistic son sank, whether your autistic daughter can play Bach fugues by memory, or just what “special gifts” your autistic child has, point them to this video. Those gifts are on one side of the spectrum, but Autism Every Day shows the other side of the spectrum.

16 Comments:

Blogger Melissa H said...

I LOVE your last paragraph. I, too, posted about this video today. I hope that it will be a wonderful tool to help people outside of the ASD world begin to grasp the magnitude of how autism affects families.

5/15/06, 9:59 PM  
Blogger Mamaroo said...

I watched it today also. I thought about sending the link to my friends and family, but then I didn't because I didn't want it to seem like I was looknig for sympathy. I think that is how some people may take it. I thought it was good though. The part about how most of the families had a story about their child running away and toward traffic got to me. Safety for my child is of course my biggest concern. I did kind of feel like counting my blessing after I watched it though. I really don't feel like we have it all that bad. Yes, Autism is not easy and everyone's situation is different, but ours if far from a "living hell". I could realte to most of what each parent talked about on the video though.

5/15/06, 10:19 PM  
Blogger Kristina Chew said...

"Sometimes autism is so profound that hope becomes a scarce and precious commodity." Well, well, said. And that "a whole family gets autism." For us--as for yours--it's made us well-worn and weary, and stronger.

5/17/06, 4:11 PM  
Blogger María Luján said...

Hi Wade
Because of some problem of speed I have not seen the video yet. However, I have read several comments , besides yours, about what is said by some parents in the video.
I do think that the main problem we parents must face is the lack of support. To find help ( biomedical, traditional, educational, emotional) was a nightmare for our family. The message was almost always the same (Autism=Hell, Autism=Cancer, nothing to test, speech therapy, OT, special ed., -other-Floortime-psychological support to accept, the end). Only with a lot of personal and familiar research (because we involved in the journey our daughter) we have found the help we needed and we have found another view, constructed personally and parentally with a path of evolution in different areas (emotional, parental and if you want of the general attitude about what is truly important) of what autism is for our son.
I do think that the lack of real support and the message that is provided by mainstreamed medicine conditionates the answer of the parents to their children in many cases and let them vulnerable. But for me the parents are not to blame. Having the privilege of high education and the possibility of afford some resources I can and I could have access to information and to discriminate what is serious and what is not under my personal analysis and the consultation with serious doctors. Parents do the best they do with the resources available, in the majority of the cases. And the challenges to face are huge... with almost no support from mainstreamed and a lot of confounding messages from different sources.
Like you, I consider myself privileged because hope today is possible looking the progress our son did last 2 years. But each child is unique. Sometimes hope is very difficult. Add the lack of support to communicate with the child, to learn to if it is needed, does not collaborate.
I think that the problem is how this presentation of the true challenges we must face- that for me is lack of adequate support and information in all the possibilities of treatment and emotional approach-can be misused only as a tool for particular objectives. Parents need support to understand how autistic children communicate. All the family need help. And only selected people - that you must be enough lucky to find-.is effectively providing it.
María Luján

5/17/06, 9:00 PM  
Blogger ballastexistenz said...

I'm sorry, but my entire family is not autistic. I am autistic. My brother is autistic. My father is autistic. My mother and my other brother are not autistic.

I am autistic all day and every day. Even if it were true that my family became "autistic" by the nature of being around me or interacting with me (which they do not), they do not interact with me all day and every day. I live over 3,000 miles away from them.

If they had abandoned me, I would still be autistic. And they would still be, their usual mix of autistic and non-autistic.

If they die, I will still be autistic.

I know this sounds like a semantic distinction, but I think that it is crucial. I, as the autistic person, deal with being autistic every second of every day. No matter how often someone spends around me, it does not make them "autistic", it does not make them someone who deals with what I am dealing with.

I have a friend who is also autistic. We were talking about staff. And how staff get respite hours away from us in which other staff work for us.

She was saying, "When do we get respite from them?"

We don't.

A burned-out caregiver can walk away from having to assist people in that way. Even if they never would, even if they don't want to, even if they would find it unethical, there's still a choice. A burned-out caregivee can't walk away from needing assistance.

The caregiver is popularly valorized for their role in taking care of us and the self-sacrifice and burnout that results. The caregivee is viewed as a burden and the source of the caregiver's problems, even though we experience equal or more strain in the relationship. If we express that strain, we are often viewed as demanding or selfish, rather than the selfless caregiver.

These distinctions are important, and they are part of why I will never believe the idea that if one family member is autistic, all are autistic. And this is from someone in a majority-autistic family.

5/18/06, 8:03 AM  
Blogger Wade Rankin said...

ballastexistenz,

You are right that it is a semantic distinction, and you are also right to criticize me on that point. My intent was to point out that autism has an impact on more than just the autistic individual. That is not to suggest that the impact on the family member’s life can be qualitatively compared to the impact on the autistic’s life.

If they had abandoned me, I would still be autistic. And they would still be, their usual mix of autistic and non-autistic.

If they die, I will still be autistic.


Exactly. The impact on the non-autistic parent ⎯ and I’m primarily speaking for myself and others I know ⎯ is the feeling of utter helplessness thinking about what might happen if we are not there. As one of the parents in the video put it, “I can never die.”

The parenting I learned from my own parents dictates that I live for my children. (Please note that this is entirely different from saying that I live through my children.) I don’t think I am in the minority in that attitude. So I cannot minimize the impact of a child’s autism on his/her family.

My son’s autism has a profound impact on not just me, but also on his mother and his siblings. We all feel that impact in a different way. But you are correct to point out that we cannot know the individual challenge that comes with being autistic.

Thanks to all of you for your valuable comments.

5/18/06, 10:43 AM  
Blogger Wade Rankin said...

Ballastexistenz expands on her thoughts at her own blog. Her perspective and mine are obviously quite different, but she has made me pause to consider my thoughts (a not-uncommon experience for me after reading her blog). It’s well worth reading.

5/19/06, 2:04 PM  
Blogger Kassiane said...

Everyone who isn't a parent of an autistic child should watch this video?

As an autistic adult, I find that offensive. That video is not what happens all day every day.

As an autistic adult, I am horrified when a parent talks about killing their daughter who is right there. I am more horrified when people reccomend watching such a video, or saying it represents parenting an autistic child, or whatever.

There were 2 murders of autistics Mother's Day weekend. Just after that video came out. One I know is being taken to trial, but not going for max sentence (Katie McCarron, suffocated with a bag, hadnt been with her mother the killer for more than 2 weeks). The other, a 19 year old whose parents torched their apartment after locking him inside, well, they better try that.

But if everyone watches and believes the whole Autism Weeps video...that autism is nothing but tantrums and murder inducing thoughts, the poor poor parents, we know it'a all about them and having a child Like That would drive anyone to temporary insanity!!

Then there will be no justice. Juries are stupid. They believe propoganda. That video is incredibly negative propoganda. And brutal murderers will get by with just a slap on the wrist.

All because people took that video as gospel truth. Therefore, our lives are worth less.

That means in the public eye, YOUR CHILDREN are subhuman.

Is that what you want?

5/31/06, 4:17 AM  
Anonymous Anonymous said...

Re the comment:

"There were 2 murders of autistics Mother's Day weekend. Just after that video (Autism Every Day) came out."

I think the video Autism Every Day is brilliant in terms of helping the public understand the challenges of raising a child with autism.

Regarding statment above: It is a fallacious argument to say that this video inspired murder. For example, if I announce on my blog that I am suicidal, and then some readers kill themselves, am I at fault? Of course not.

Witnessing a mother's confession of murderous/suicidal thoughts is intense. But raising a child with autiism can also be intense. The truth hurts.

Unless parents get more support, the reality is that these tragedies will continue. Autism Every Day was created to raise awareness, as well as to inspire our elected officials to understand the gravity of the problem, and allot more funds to autism-related causes.

What if Illinois had services in the first place and the McCarron family didn't have to split up? The situation must have been unspeakably stressful for this family; walk a mile in someone's shoes before you judge them.

McCarron will never find a true jury of her peers because parents like herself, who moved due to an autism diagnosis, are too busy for jury duty. But if they did find 12 such parents, they would not send her to prison. A dedicated autism mom who gives up and kills her baby is already experiencing a hell far worse than jail.

Instead of complaining about the Autism Every Day video or judging this mother, honor Katie McCarron's memory by helping increase services for autistic children and their families.

6/16/06, 8:21 AM  
Blogger Kassiane said...

Illinois HAS services.

Know how I know? I spent more of one summer with a kid IN THAT AREA than his whiny, defending the murderer mother did.

Her grandfather says THIS ISN'T ABOUT AUTISM and that using Katie's death as a plank in your platform ("we need more services so we don't lose it and murder small children like that poor woman did!") is insulting.

And I agree. It is insulting to Katie's memory. Even suggesting that her death is all about her mother is an insult to her memory. It's an insult to all autistics, but mostly to those who were killed.

Oh. and I bet if Karen McCarron's computer was subpoenaed they'd find the autism weeps video link on it. I hope they do, and I hope they lock her up forever.

AND I'm ballsy enough to say it with my name, not "anonymous".

6/22/06, 11:37 PM  
Blogger Wade Rankin said...

This comment has been removed by the author.

1/18/07, 9:27 PM  
Blogger Wade Rankin said...

For my subsequent thoughts on this film, and I did revise my opinion somewhat, follow the link to "A Season of Joy, Hope and Transformation."

1/18/07, 9:30 PM  
Anonymous Anonymous said...

How can I get a copy of this video? I cannot get to the autismspeaks website...seems like ti's not working! thanks

3/21/07, 9:32 PM  
Blogger Wade Rankin said...

For what it's worth, anonymous, the link to the film in the post above seems to be working fine. I also have to add that if you follow the first couple of "links to this post" below these comments, you'll see that my enthusiasm for the film has waned somewhat.

3/22/07, 4:53 AM  
Anonymous theeobviousone said...

I really liked this video and was disgusted with the reaction from the autistic advocacy front. Here was a woman talking about considering suicide after visiting one school after another that showed no future for her daughter (every child has a right to a decent education!), and people "hang" her on a couple of "wrong" words, accusing of practically delighting in the thought of callously murdering her autistic daughter.

This is a film about how parents of autistic children experience the prejudice against autism these so-called "advocates" fight for so fervently, but it seems if it's only NTs suffering then suddenly the prejudice is justified?!

PS: Why is the "Can't read the verification" bit represented by a wheelchair? ;)

4/4/07, 5:09 PM  
Anonymous Angela said...

Thank you!
I need this help to help my child... I love her more than anything in this world and I just want the best for her like all of you.

9/17/07, 8:53 AM  

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