Tuesday, January 30, 2007

Say what!

I learned something new yesterday...we parents do not have to come up with the $70,000 per year for ABA Therapy that our autistic children so desperately need! It turns out that all we have to do is contact our schools. Call early Intervention! They will immediately enroll our child and get them started with their 40 hours of intensive one on one ABA therapy!

Hmmm. Perhaps I called the wrong early intervention. Does anyone out there know the right phone number? Or maybe I need to find out the planet where the mom who made that comment lives!


Yesterday, I eagerly awaited the morning show, "The View" to see what kind of coverage they would have regarding Autism. I had heard that they were devoting an entire hour to the topic. I knew it was focusing on the Autism Speaks video, "Autism Every Day". I have heard a lot of criticism for that documentary being too bleak. I, myself, saw the video as serving the purpose of drawing attention to the plight of families experiencing the disorder. Yes, it was a bit over the top. Yes, it was dark. But it did make a point...that autism can be overwhelming. Notice the words "can be". I didn't say "is". Autism can be very overwhelming for a family. Some families pull through it. Some do not. Let's face it, if the movie said "Autism is rough. But we are managing fine" what kind of funding would it draw? And let's face it...this world is about funding.

I figured that they would show the snippets of darkness from the "Autism Every Day" video and offset it with interviews with families. Yep. That is what it was. Lots of statistics. For those of us in the trenches this provided nothing new. We saw children who were verbal and a couple who were not. It demonstrated the spectrum. We also saw a young lady who was 17 and talked to the parents who expressed their concern about what would happen to their daughter when she lost her school services. One little guy was "on his way to recovery" and we witnessed a good banter between he and his mom. It was beautiful!

But what did the worried parent sitting at home with their 2 year old who was showing signs of autism take away from this episode? Early Intervention is key. ABA is the way to do it. Call your school. They will be chomping at the bit to give you your free 40 hours of intensive one on one therapy. This therapy is what will save your child. The viewer also met families that have have done wonderful and are coping well. (Interestingly, these "representative" autism families all had books that they authored to present to the audience.)

But this new parent to Autismville really got no answers about what causes autism. Apparantly it is genetic and the Y chromosome holds some of the blame. One participant mentioned testosterone and that discussion was immediately squashed. You see, the simple version of that story is that testosterone suppresses the body's detoxification processes. If discussion went to detoxification it might go to environment. If it went to environment it might go to mercury. If it went to mercury it might go to vaccines. If it went to vaccines it might go to pharmaceuticals. If it went to pharmaceuticals...the companies that paid for the commercials would get really upset! It is always about the funding!

Thankfully this new autism parent came away from this show with hope. I agree that that is great. But they also came away with the false belief that the school system is going to give their child all of the services he needs. Also, when the parent researches and comes across biomedicals, he is going to think that since there was no discussion of the biomedical therapies on a "current" show about autism then there must not be any credibility to it.

The outside observer who isn't living autism watched this and became worried about the children in their life. Then their concerns were lessened when they realized that this is a genetic disorder and there has never been any autism in their own family. So they must be safe. And gosh, the plight of these families to help their children isn't so bad...after all, the schools provide everything they need! What are these families always complaining about...they don't need additional funding!

In some respects, I feel that this attempt to shine the spotlight on autism did more harm than good.

5 comments:

WarriorMom said...

Wow. I missed the show, but apparently, I didn't miss much.

mjsuperfan said...

I'm glad I didn't see it, because it would have just gotten me all worked up. I saw an ad for it that looked as if they were going to portray ABA as the answer everyone is looking for.
Even if we could somehow afford full-time ABA for our twins, I don't think that would be my choice. Maybe 15 hours a week, and then either floortime or RDI.
It feels as if we are all out here, trying to cobble together a program which fits our families, and that we can afford, and adjusting as we go. The challenges our kids face vary so widely, there isn't any one program that will work for everyone, even if schools would pay for it.
Thank God for bloggers! I'm learning so much, and it keeps me hopeful and motivated.

Mom without a manual said...

I apologize for my rant. But I felt much better after put it down in words. It is as though some of my chip on my shoulder fell off!

The show still had it's good points. I just get so frustrated that no one ever openly talks about all the options/possible causes. Families can get so confused what to do.

I know that when we started down this path I believed I could rely on the professionals to lead us through it. After all, they have the degree in medicine and/or education, right!

Eventually, I realized that it was up to us to find out what works and do the best we can. It is just so frustrating to see news sources (I use that word loosely in this case) not provide a thorough account. Many US citizens still believe they can count on the news to tell it like it is! And few would ever believe that these news sources would purposely mislead them.

That is so depressing and scary at the same time!

Anonymous said...

I am not sure where you are from Mom, but our province provides complete service in ABA and/or early intervention.
It is an ever increasing demand because, as parents fight for the rights of their children, government slowly responds.
I know I told MomNOS, but our MP ( government representative) has a son with Autism and he has brought a number of motions forward to the Canadian government. He puts out a report on his progress each month. If you are interested, let me know and I will make sure you are added to the mailing list. Perhaps some of his work will be of help for you.
4

Mom without a manual said...

For What it's Worth,
I've been told that the state I live in ranks either 48th or 49th WORST in disability services. We are in the midst of a lot of advocacy attempts but as you mention...it is slow progress.

I am fortunate that I live in a metro area and have access to a couple universities. I am able to find education majors who are interested in working for us in our home program.

Our school district supplies JP 12 hours of preschool a week. It is not one on one and definitely not specific to autism. It definitely does not meet all of our needs. I suppose we could threaten litigation but I don't have the energy for that...I am investing it all in my son.

I left work and am at home coordinating his home program. This hasn't been easy but we are doing the best we can to make it work. I truly feel bad for the other local families that aren't able to do all this themselves.

Yes, in time with what advocacy we have going on the services will likely improve but that is time that my son does not have to sit and wait!

I truly feel bad for the other autism families in the area that are not able to do it themselves.
It is so unfair to their children. Society will pay for this either now or later...but the legislators don't seem to realize that!