What bothers me is not so much the ABA/IBI itself (I have my own personal experiences and issues with it), but the fact that people are seeing this is the one and *only* treatment for autism...which it is not.
I have seen people (mostly parents) saying that the "Neurodiversity Community" (adult autistics in other words) are saying that therapy (ABA/IBI) is a form of disrespect and parents wanting therapy are hindering their children.
"What we have here, folks, is a failure to communicate." ...and isn't that what the therapies are addressing?
What's going on is that both sides of adults are not communicating properly...it's not one -sided in this case.
The ND's or Neurodiversity advocates want to see acceptance (that being the true meaning of the word - accepting us a valid human beings, not as "bad dogs") and *appropriate* treatment for autistic kids, so that they can grow up to be happy, healthy, independent (as possible) and successful adults in their own right.
Is that not what the parents want too? Appropriate treatment so their kids can grow up to a nice adulthood? I hope so...
Where the rift is happening is with regards to what this "appropriate" treatment is, in my opinion.
Parents are being told that ABA/IBI is the one, the only, truly effective therapy for autism that there is. Therefore, they want it...and why not? They're parents doing what parents do: trying to do what's best for their kids' future. How can anyone fault that?
The problems with ABA/IBI being the "one and only"occur here:
1. It's darned expensive...Yikes! Looking at just the Canadian range of cost for *one* child: $20,000.00 - $80,000.00...multiply that by how many autistic kids we have in this country alone (if we want to get on the epidemic bandwagon here) and you get a *lot* of money that the government is going to have to spend if this is the "one and only" way to go. Holy cash cow, Batman!
2. It's not that well regulated. There are lots of different types of ABA. Some have called them the "Good ABA" and the "Bad ABA" or even the "Traditional ABA" (usually equated with "Bad ABA"). Yes, one has to be trained to be an ABA therapist, but I've seen enough people here talking about how different said therapists are. Some are downright oppressive, to the point of teetering on abuse. Others are very compassionate and are giving the kids breaks, addressing their needs, etc. There's no consistency. Why? Because you're dealing with individual therapists - people with their own beliefs, perspectives, experiences and practices.
3. It's not really proven to be all that effective in the long term. It may work wonders in the short term, but if the causes are not addressed, then they are going to get worse and eventually "crap" is going to hit the fan...when that person is an adult and no longer covered by childhood services.
4. No one therapy works for everyone. Not all heart patients, schizophrenics, epileptics or diabatics are going to do well on the same medication. Each person is different and has different needs. Autism is no different. By limiting treatment to just ABA/IBI, some kids who might otherwise thrive on another form of treatment may end up being set up for a huge failure. I don't think any parent wants to see their options limited that badly, do they?
5. It's not really addressing the causes. Many have said that certain behaviours are caused my things that ABA is not seeing or addressing.
6. It is an educational method, not a medical treatment. Pantoloc for my acid reflux is a medical treatment. Physiotherapy for a sports injury is a medical treatment. Teaching a child how to our how not to do things is teaching. Disciplining or rewarding a child for poor or good behaviour is simple teaching. Parents and teachers do it all the time with all types of kids. It may work, but it's just teaching. I would not pay that kind of money for someone to teach my kid, if I had one. I could do that myself.
In fact, parents are doing behaviour modifcation all the time "Johnny, stop chasing the cat or else you're going for a serious time out!" "Jenny, good job on winning the spelling bee. I'm so proud of you!"
You can call it therapy all you like, and behavioural therapy is a type of therapy, but in the end, the medical problem that is causing the behaviour problem is still not being treated, is it? It's not a complete therapuetic resolution.
What many of us on the spectrum want is a complete and actually effective treatment. I would love for some of my core problems to not be problems anymore. I also want people to see me as useful, valuable and valid, not just as something that needs to be eliminated or forced to conform with no benefit to myself. I also don't want to be equated with a travesty, disease or epidemic, thanks.
I want to be accepted a human being. I'd like, for once, for someone to recognize the good things I can do as an autistic adult. I'd like for people to give their kids a future where they will know they are loved, valued and accepted. I'd like for them to be able to grow up and be happy, healthy, independent (as possible) and successful adults in their own right.
I think we are all on the same page: we want a bright future for us and our kids.
I have my own personal experience reasons for not liking ABA...I had some bad therapists in a time when "bad ABA" seemed to be the only one in existence.
I believe that, until we find something that really addresses everything, that really works, it's going to be a struggle for all involved.
I think we need more communication...on both ends of the spectrum and beyond.
Is that reasonable enough? Am I making sense?
Are we not all on the same team?
