Thursday, February 7, 2013

Therapies: Why Quitting Was For The Best

*This is our experience. Every persons experience will vary, this is just one families views.*

What is the first thing any parent gets when their child is diagnosed with autism?  The list of recommended therapies   Now if you really look at the list between ABA, OT, ST, PT, CBT, etc.. therapie can become a full time job.

Our case was no different.  When Roger was diagnosed I was handed a list of suggested therapies. Our list included OT, ST, ABA, CBT, social skills and a psychologist. Here the thing about all of these the wait lists are huge.  Some of the lists were almost two years out.  Just calling becomes a job.  Most of the places will either say no room or they just wont call you back.  If you do get in their mindset is not the same as yours.

I called a couple different companies for ABA, one three months later got back to me and sent someone out to do the intake.  First off they normally only dealt with small children not a 12 year old. Second everything was scheduled during school hours, this was more for their convenience than mine.  This meant he missed a day of school to do the intake.  The lady came out and spent about two hours with us. Asked a bunch of questions, observed, all that stuff.  In the end her plan was to stop behaviors she saw as annoying where my idea was more practical issues that I was told they could help with.  I don't care that he taps his foot or paces no big deal. He needed help organizing. Everything from his room, schoolwork, even showering.  This was not her plan.  Before any of that could happen he would need min 20 hrs a week ABA  I didn't feel that was appropriate.  How was he going to participate in after school activities? How was he going to just chill out and not have to work all the time? Basically it was I obviously didn't care because I thought the amount of time was insane. He would go to school then come home and work with ABA until dinner time then go to bed. What kind of life would that be?  After the intake we never saw them again.  They did call a couple of times but unless they were willing to help where we needed help not what they thought was important and take the min time down we were not interested. ABA was out the door before it even began.

Social skills groups, wow don't even get me started what a joke.  I called and spoke to a few. Almost all of them were full plus the cost for a month which was just a few hours on Saturdays was upwards of $800 plus dollars.  When I asked what they did the response was always facilitate social skills. What dose that mean? "Well we give them scripts in a group setting, play games, etc."  So the conversation is forced? "No facilitated by a adult who is trained".  That still sounded forced to me.   The more they talked the more turned off I got. A friend had also told me of a club in town that had lots of activities for kids in a no pressure environment they could pick and choose what they wanted to do and it was only $50 a year. I should mention this was not a social skills group, they never claimed too be any sort of therapy just a club. You see though anytime you get people together over a similar interest in a activity they do interact with each other. If we hadn't moved to a different county we would still be part of them because it was fun.  It may just be me but the best social skills training has not come from a professional but rather just being a kid.  The best way to learn is to get out in the world and experience it. As you experience you learn what is expected and how to act. This goes for all of us.

Speech we did for a year for Roger and three years for Lucy.  Lucy did not talk until she was five and yes I do think the speech therapy she received through the school greatly helped her.  Roger he has a different speech pattern.  No one is quite sure how to explain it but he can be understood.  They worked with him for a while and really nothing changed.  When we sat down with the speech lady we all Roger  The SLP, and I decided that it was time to end speech.  He still does receive some speech twice a month at school but all after school private has ended.  It was not changing anything just using up time.

We also did OT. He has some handwriting difficulties that she was willing to work with. While we had OT for a year the handwriting was thrown to the side about a month in.  We all realized nothing was going to change and it was just stressing him out.  He can use a computer so not worth the stress to force it.  They moved on and did some strengthening  balance and fine motor things instead.  After a year we stopped.  Really all we were doing was spending time in offices taking away from activities that he was interested in.

We never did find a psychologist that could do CBT with him for anxiety.  Once yous say autism they all back away.  Since we moved we do not have the sever anxiety anymore.  I know for many that is not an option but for us it was.  We needed to move and it just happened to have a good benefit.

It's been almost a year since we quit all therapy.  If I had to do it over again yes I would make the same decision   Knowing what I know now we probably wouldn't have gone through all the stress of finding therapist  intake, and spending so much time in office's that proved to do nothing.

In the time since we have moved and ended therapy the meltdowns have lessen.  He is no longer stressed by therapy.  He has a few friends in the neighborhood from school, and he participates in activities.  I truly believe that just being kid and participating in activities he likes such as baseball and Lego club have done more for him than any therapy I could have paid for.  I also believe by never taking the therapy that wanted to change him reinforced to him that there is nothing wrong with who he is.  Yes we have worked to change some behaviors but really that is part of growing up.  All kids have behaviors that need to be changed but there is a difference between changing a behavior and trying to change a person and I for one can not stand behind any therapy that's whole goal is to change a person.


  1. Lily handles her OT/Speech stuff pretty well, but we often wonder how much is "too much".

  2. I agree with you on letting kids be kids and have time to play and socialize on their own terms. It's funny though, when my son was diagnosed at age 6, they just told us he had autism, and that was about it. No one gave a list of therapies to pursue or anything, and since I was new to the whole thing I figured that was the norm. If I had known about ABA back then I probably would have tried to find a provider. He gets speech through school and has done pretty well, he is 13 now. I just wish they had been more helpful back then.