Friday, March 27, 2009

To embrace autism or not to embrace autism that is the question... or is it?

Right now there are two groups advocating for autistics, one is committed to doing all they can to find a cure the other is fighting for neurodiversity. Those fighting for neurodiversity don't see autism as tragic, but as another way of being and think that those focused on a cure are rabid "curebies" who don't appreciate autistic people. Those focused on finding a cure feel the other group is crazy and counter productive.

So what do we do? Embrace people with autism as they are, or do all we can to find a cure and provide as much intervention as possible? I don't have the answers but I can say I've been walking down this road for over 10 years now. As I grow in my understanding of myself, my child and my autistic friends my perspective has changed a little.

First off let me say I have done everything I could to help my son. We've tried many approaches some worked and some were a waste of time, money and energy. My son is doing incredibly well, he no longer exhibits self injurious behavior, he is verbal, high functioning, and probably would be considered to have Aspergers at this point. I continue to work with him on social skills, I continue to work with him on self help skills. Possibly one day he may be able to live on his own we don't know yet. As my son and my friends kids have gotten older I have seen some kids respond amazingly well to interventions and some didn't. My son is going to be fully mainstreamed into high school next year. My dear friend's son just went into a group home for the safety of herself and her son. Another friend's son is a little quirky but wouldn't be considered on the spectrum.

The therapies that my friends and I fought for and lost our homes, marriages and sanity for are now considered routine, safe and effective. There is now irrefutable evidence that shows kids on the spectrum can learn if given the right tools and mode of instruction. (G did not turn into a robot after participating in ABA...) Are all kids getting all of the services they need at this point, no. Does more need to be done, absolutely. Do we need to research why the incidences of autism are increasing, I personally believe yes we do.

However, there is another side to this. I want to remind everyone, despite the claims being made by a variety of people, at this point there is no cure for autism. My son is not neurotypical and most likely never will be. My focus has begun to change. I'm not looking for a cure, I'm looking for understanding. I love my son, I love his personality. He is a visual thinker who has a fascination with flight, air flow, and wing design.. he is 13. (BTW Math is his favorite subject.) I have a feeling he's going to make an incredible contribution to society some day. I love the person he is becoming. He's going to need extra help in life, but my desire, my passionate desire is that people will embrace him as he is.

I also want him to feel proud of himself, of who he is. He doesn't need pity, he needs understanding, and some accommodations. At this point do I want him cured? No way, as my friend Temple Grandin once stated, "why would we want to cure all of the autistics? We would lose all of our scientists, engineers and computer nerds."

My bottom line is this. Yes let's keep looking for a cause, and fighting for appropriate interventions. At the same time as our kids get older let's celebrate who they are becoming, be proud of them as they are, celebrate their neurodiversity, and continue to support them in any way possible. I also say lets support the autistic adults who are now speaking for themselves. They are people, who deserve to be listened to. Their perspective is important and if we let our defenses down we may be able to learn from them.


The Glasers said...

I prefer to look at it this way: I have always sought to improve our quality of life (Pamela and ours). I appreciate my daughter and think she is the best thing that ever happened to us! BUT, if something happened to us, she could not support herself and would be limited in her opportunities.

So, what we continue to do day in and day out is work on refining her abilities so that she will be more able to choose what she wants to do in life. That does not mean we are stamping out the incredible gifts Pamela has (like being able to tell you the day of the week you were born given a date OR having maps in her head--she's our GPS). We are helping her learn the skills she needs to make the kind of choices folks like Temple Grandin have been able to make!

So when people try to peg me into one group or the other, I am going to fit it. I don't stand for cure if it means being miserable at every little setback or neurodiversity if it means sitting on my hands. I stand for common sense, compassion, and understanding.

farmwifetwo said...

The ND crowd paints the cure crowd as rabid fanatics. The ND crowd doesn't advocate for services, education or growth to independance. They don't like ABA therapies (I didn't like my version but I do like the token program style that's being used by the school - ABA is a BROAD spectrum therapy which people don't realize). They don't advocate for other therapies, even speech and OT.

Estee - Joy of Autism - doesn't think her son should have to learn to talk. He should EVOLVE?? I don't want mine to EVOLVE I want them to be educated and learn and be independant adults. My eldest has gone from mild, non-verbal PDD to NLD w/ language learning disability in 7 short years. He is mainstreamed since JK and current - FINALLY - has quarter-time support which probably won't last very long before he loses her again.

My severe, non-verbal one, read's at age level, language is significantly delayed but speech is coming, he can add/sub easily with counters so we are moving on to a calculator since he hasn't grasped he can memorize math facts.... don't know how far he'll go but he's only 7 and he too is breaking all the "rules" so we'll keep pushing him along.

I have NO use for the ND crowd, like the cure crowd, neither fights for teaching those with Autism to become independant adults - like Temple Grandin. Have you ever noticed that the ND crowd doesn't like her b/c she doesn't think autistic people should be allowed separate social/behavioural rules??

If education, independance, having your own life and a family is CURING my children... then that's what I'm aiming for. They are NOT the next in the evolutionary development of the human species.


Christine Rogers said...

I really enjoyed your article. I am in the ND crowd to be sure. I started to get more and more that way the more adult autistics that I spoke to.

I want to address this to FarmWifeTwo (S). I have not personally encountered anyone in the ND community who does not advocate for ABA, OT and Speech, etc, but I don't doubt that they exist... those people are crazy. That would be like saying that NO children should go to school or ever be taught anything... that's just... stupid... sorry but it is. I am against things like chelation, and I'm against Autism Speaks who are funding gene research so that parents can find out if their children have autism in utero so that can abort them. I think people need to understand that Autism is like Down's, or CF, or lots of things... there is no CURE, so stop torturing your kids. Give them tools to be able to function in the world without pain or fear, and try and get the world to understand more about Autism. I really wish that people would not lump these folks who are advocating for zero intervention = neurodiversity crowd... it DOESN'T. That's like saying Christians are all members of the KKK b/c the KKK identifies themselves as a Christian group. It's a tiny group of extremists... period.

Christine Rogers

farmwifetwo said...

The problem is... those that advocate that it is a "difference" and not a "disability" are getting time in front of Senate committees in Canada and the USA.

That I find frightening.

Angela said...

Bonnie I feel the exact same way you do. Thank you for writing this.

Beautiful post.

Anonymous said...

Good post and very tough topic. It's nice to see it put in a perspective :)

K said...

gorgeous post

lonestar said...

Thanks for leaving your link on my blog, I'm so glad I read this.

I can really relate to your thoughts. I have never been particularly interested in a "cure" so to speak, or in "changing" my kids, but I am a strong believer in doing everything we can to help them be able to learn and adapt so that we can help open up opportunities to them (isn't that what all parents do for their kids, autistic or not?). Speech, OT, social skills training, and educational support have been invaluable for my kids. At the same time we try to promote understanding and help the world adapt to them too, one person at a time. After all, they have some pretty amazing talents too :).

K said...

I am addng you to my list - I find you through Danette .. you have a lovely POV
One of thismom's post ( do you know her- Kyra Anderson ) about "straddling the lines" was also about this

robinson said...


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LAA and Family said...

This is a great post! I share your point of view for the most part.

Queenbuv3 said...

Bravo! I love my son as a person who has Autism not as an Autistic. Of course we want our son to improve his quality of life like any parent but we draw the line at experimenting on him like a lab rat with dangerous and unproven drugs and substances. We tried the gluten and dairy free diet for a whole year when he was little, the entire family ate it, and saw no improvement. We tried to force him to live up to the expectations of neurotypical children his age with ABA and it just made everything worse. When we decided to accept his Autism and get to know him, he showed us that he could let us know through his behavior when he was ready to learn something new or was developing a new interest (natural motivater). My son has some really wonderful qualities that other boys his age that are typical don't usually have. I worry that too many people are missing out on getting to know their children as people and giving them the love and acceptance we all need to grow and develop a healthy self esteem by trying to change everything about them that isn't "normal". It is so important for any child to receive praise when they AREN'T performing a task for someone. Our son has always had OT, PT and Speech. I have never even heard of these people that farmwifetwo is talking about that don't believe in any type of therapy.