Most importantly, this comment perfectly voices the terrible fears and frustrations that many parents feel. Even my own parents found the "system" frustrating.. and me even more so, I'm sure! They've said that they often "felt alone" in their battle and I'm sure many, many other parents feel this way too.
Parents and families need to be heard as much autistics do, in my opinion. And those professionals and societies really should start listening! Do families need more gloom and doom, or do they need something from these folks that actually helps? Is there not enough fear, uncertainty and frustration in their lives without all that? Negativity spreads... to the parents and ultimately to the people at the business end of the treatments: autistic people.
Some parts of the comment seem to be accusatory (with regards to the evolution opinion, etc.) and I have addressed them.
The original comment:
Dr Fitzgerald's book is frightening. He pretty much writes... they'll amount to nothing, don't do anything, let's just let them be and evolve.... I think that's as damaging and anything Jenny writes. I don't like either of them.
On the HFA end of the spectrum Autism is "ok". We've managed it. He'll be as "normal" as the next person.... actually at nearly 10yrs he already is.
The other end is frightening. Frightening when you just can't get through to them. Frightening when you wonder what you're doing wrong. All the support in the world doesn't help. Actual suggestions that work to make communication between parent and child happen is what is needed.
ABA did go through the wall... totally by fluke... she signed "all done" told him to "do this" mimick it and took away his book. He said "no" and slapped his hands together in "all done". After that instead of mimicking they taught him correct signs and pec's for objects b/c that's what we'd been working on for the prev 18mths.
Otherwise.. ABA was a disaster.
Those autistics that can write, speak, hold jobs and marry tend to refuse to acknowledge the fear that parents with children on the severe end of the spectrum have. Parents of those children on the upper end of the spectrum do the same. Until you live my life.... don't cast stones.... and extra support doesn't stop the fear.
Since my response was too darned long for Blogger to post as a response to a comment, I am posting it here:
I agree: All the support in the world will not cure the problem. It may not make the person any less autistic... and to be perfectly frank, it never will. That autistic person is who he or she will always be. No amount of *anything* is going to change that unless that person can make that change!
However, support can certainly help make life easier... *if* the support is the right type of support! Many of the "supports" out there are inappropriate because the full scope of autism is not known. That is really bothersome since it isn't doing families or autistics any favours.
You have probably experienced this first hand and are rightfully frustrated!
How do you effectively treat something you don't understand in its entirety? You can't and that is the root of the problem!
Yes, you are right that communication between parent and child is needed...so badly needed! However, if it's not there, what do you do? Some people have tried facilitated communication or even just teaching a child to type. Many autistics who type the most amazing things cannot care for themselves and are in care homes or have caregivers working in their homes. Some can't go to the toilet on their own. Some cannot speak at all. Writing does not equal "high functioning". It just means the person has a way to communicate.
Communication is a difficult thing. How do you connect? I wish I had the answers. I don't know your children the way you do.
Can you please provide some possible solutions to your woes or the woes of parents with severely disabled children?
Even just a wish list of what you'd like to see, do or have done by someone else? Go wild with this since you may have an insight no one's thought of because you might think "Oh, it's too silly or impossible to actually happen". It might actually *be* possible!
What service would provide you and your children with exactly what you need?
Do you have any answers for those of us who need to understand?
I open the floor to you now. Please make some suggestions! Please make the world understand what it is you *need*.
People need to know these things so they can actually be a help and not a hinderance.
Now on to some of the more digging parts of the comment:
First off, I never will believe that autism is the next step in evolution. Other autistics who speak up for autistic rights and I have been accused of this repeatedly and I am going to put a stop to it here right now,
Sure, I've entertained the idea from time to time but have found it to be fallacious and fanciful. (You know, the "What if...?" factor) It's interesting that this comes up, because someone mentioned it on a newsgroup today!
If what I have is "evolution", then I really wonder where the human race is going. Seriously. Sure, I'm smart and sure I do a lot of things NT's can't. But I would also like to not be so hypersensitive, feeling ill all the time and able to fit in better.
However, autism didn't just magically "appear" in the 1940's when Leo Kanner and Hans Asperger were making their discoveries. They just "noticed" that some kids had some very different traits and wrote papers about them. In fact, Asperger wrote his papers so that the government would not decide these children were disordered burdens and therefore not "eliminate" them as was happening in his country at that time. Personally, I believe that autism has been around for a long time.
I know some high functioning people do believe this but I am not one of them. For me, autism is not evolution and it's not fun either. Perhaps they see something I don't or need to make themselves feel better. I don't know.
I don't how much more clear I can be on this ...
With regard to the comment that HFA's that "write, speak, hold jobs and marry tend to refuse to acknowledge the fear that parents with children on the severe end of the spectrum have", I almost get the feeling that this is a personal dig against me since I can do all of those things. The written word is difficult because I cannot fully see or feel the emotion behind it. You may not be attacking me at all. I'll assume that it is just general frustration at a system that is not working out too well more than a personal attack against me (please correct me if I'm wrong).
However, I should make it *very clear* that I do not discredit those folks at all. In fact, I can try to understand their frustration as best as I can.
I recognize that autism is a spectrum condition - that means that there is a scale between severe and mild autism spectrum disorders. I know that not every autistic has the same abilities or disabilities (I've said that enough times in my blog).
I try to do that with my blog (express my needs). Yes, I'm high functioning, but I also have my frustrations, difficulties and woes. I use this medium to complain, but I also try to provide some input on what I need, what others might need based on discussions I've had with other autistics.
That's why this blog is here. However, this is just a blog... an electronic means to express personal opinions on subjects, not a medical journal or a scientific forum. It is not meant to provide all the answers. Just insight if people want to read it. It may be totally useless for some, but very helpful for others.
I try to be as well-researched as possible because I think autistics deserve that much at the very least.
Yes, I am high functioning, and perhaps that invalidates my opinions in your eyes. Perhaps that makes some folks think that I can't possibly understand what it's like to be autistic. Do non-autistics know what it's like to be autistic? Do autistics know what it's like to not be autistic?
How can anyone invalidate another if one doesn't even know? How can I invalidate you when I don't know you? We're in the same boat here.
"Until you live my life, don't cast stones", you say. For the record, I have not cast any stones at you. This post may even seem a little "stoney" and I apologize but I did have to make some things clear since they've been brought up more than once (i.e.: evolution and HFA's not knowing what it's like for parents with LF children).
Until you live my life as an autistic person who has to put up with a lot of discrimination, misinformation, inappropriate/traumatic treatments and such, I ask you respectfully to please not cast stones at me either.
To be honest, I don't think a negative attitude really helps folks who are severely autistic (or anyone for that matter), do you? Do you believe negative attitudes help to make life easier for the parents *or* children?
I would rather have more genuine support than negativity in my life, but that's just me.
Negativity does not stop the harm that is done to many of us on a daily basis. Nor does it help frustrated families reach their children or find peace for themselves. It's only fuel for the fire.
What is needed everywhere, in my opinion, is open communication of what is needed for all and recognition of the spectrum that autism is so that everyone can work together to find the causes and proper supports, treatments, etc.
Respectfully,
DJ
