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Guilt and Autism Part Two: Choosing and Limiting Therapies

By September 13, 2011

In response to my recent blog post asking whether parents feel guilty because of their child's autism, one parent said:

Because there is no definitive cause of Autism (not one that has been discovered yet), there is no reason to feel guilt. How can one feel guilty when one doesn't know in the first place? I don't feel guilty about Autism. I don't know what caused my childrens' Autism. I have a feeling that it is genetic, but it's just a feeling. My guilts lie in the direction we take ie. therapies, schools, disciplines, etc. Is it the right decision? Was that the right thing to do? Was this medication a good idea? You know, stuff that I can actually control. My children have Autism and that's a fact. Why they do, or how they do is beyond my control. They just do. And for that, I don't feel guilty.

Great point!

When our son was a toddler, a kindergartner, and even an elementary school student, I was constantly rocked by waves of guilt over whether I was doing ENOUGH, TOO MUCH, or the WRONG THING to help him.

Yes, he was in a good program at school, and getting OT, PT, speech, and Floortime.  Many children with autism, in addition to the OT, PT and speech, are receiving at least some level of ABA as well.

But there are so many other avenues to explore!

Over the years, I dipped (with Tom) into auditory processing therapy, vision therapy, dietary therapies, dance therapy, RDI, Floortime, music therapy, social skills therapy...  But being a bit of a skeptic, it occurred to me early on that there was NO WAY to know which of these would help the most, or even to be sure which were making a difference when his skills improved.  After all, he wasn't going to quit OT, PT, speech or school in order to try out vision therapy exclusively!

What was worse, since all these therapies are essentially "alternative" in the sense that a typical pediatrician knows little about them, there's no one to help guide a parent through the maze. Yes, there are coaches out there, but none know more than the well-versed autism parent about whether X Y or Z therapy is going to be the best option for their individual child with autism.

The truth is, if you take a child - ANY child - to a sensory integration specialist, they will find ways in which sensory integration therapy can be helpful.  The same goes for a social skills therapist, or a music therapist or a nutritional expert, or any other therapist.  These folks aren't charlatans: they KNOW their approach can be helpful.  They believe their method can be helpful to your child.  They're probably right. And you certainly can't hurt your child by feeding him organic food, taking him to music therapy, adding in social skills therapy, trying out auditory processing therapy, checking out vision therapy, or looking into TEACCH, SCERTS, RDI, Floortime, etc.

But in a world with limited funds, time and opportunity, which is the right set of choices for any given child at any given moment?

Our approach, in the long run, has been to radically reduce the number and type of therapies we offer our son.  We work closely with him in our home and in the community, and we work closely with his teachers and therapists, to be sure he is learning, growing, developing and enjoying life.  We seek out opportunities for him to shine, and we work hard to help him be all he can. We will never, ever know, though, whether some as-yet-untried avenue could have been "the one" that would have made the greatest difference.

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Comments
September 13, 2011 at 10:22 am
(1) Angel G says:

Because Autism is such a wide spectrum, it makes sense that some therapies will work and some will not. What worked for this child may not work for that child.
But we will never know what works unless we try it, right?

Over the years, we’ve tried this thing and that thing but we’ve really tried not to do too many things at once. ‘Down time’ is important also.

What worked, we kept. What didn’t work, we left. The tough part was knowing if it was working just because the therapist said it was or if we were really seeing change in our sons.

It would be easier if, when diagosed, the doctor would give a list of possible therapies to try. I never knew about IBI or ABA or any of the others except by chance and by talking with other parents.

How many children miss out on a therapy because the parents just didn’t know it existed?

September 13, 2011 at 3:47 pm
(2) Harold L Doherty says:

I see you do not advocate for an evidence based approach to autism interventions. You could at least mention to parents of newly diagnosed children that no other intervention is supported by as much evidence of its effectiveness as ABA. None. References – American Academy of Pediatrics, US Surgeon General. MADSEC Autism Task Force Report.

An opinion peace in the Medical Journal of Australia Children with autism deserve evidence-based intervention The evidence for behavioural therapy MJA Vol 178 5 May 2003 424, Jennifer J Couper Head, Endocrinology and Diabetes Centre, Women’s and Children’s Hospital, North Adelaide, and University of Adelaide, SA and Amanda J Sampson Ultrasonologist Royal Women’s Hospital, Carlton, VIC reviewed the impressive body of research that existed in 2003 in support of the effectiveness of ABA as an autism treatment. The authors noted “that while ineffective therapies may be harmless, they waste parents’ money and the child’s valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child’s outcome.”.

Your reader may wish to consider the 2003 advice from the Medical Journal of Australia before they engage in a range of treatment exploration that may waste their money and their children’s even more precious development time.

September 13, 2011 at 4:22 pm
(3) autism says:

Harold, I have never, ever known a human being as dedicated to one topic as you are.

Yes, I know you are a devotee of ABA. That’s a fine thing. I do not, however, subscribe to the belief that no other treatment or therapy can be positive or helpful for people with autism.

We will continue to disagree.

Lisa

September 15, 2011 at 12:02 pm
(4) Virginia says:

There are so many options for parents of kids with autism that it must be mind-boggling. I am a new music therapist and mom of two ‘neurotypical’ teens. I wrote my thesis about happiness and well-being and how music therapists can help families with kids on the spectrum. There is so much more to life than compliance, which was my personal experience working in an ABA school recently. I think that one thing we have to keep in mind is that ALL parents are trying to figure out what fits for their kids. I spent a lot of money and gobs of time carting kids to lacrosse, soccer, dance, swimming. In the end, they found what worked for them, and what didn’t (and neither do ANY of those things now). That doesn’t mean something ‘didn’t work’, but it becomes part of our experience in figuring out individual strengths. Because in the long run, isn’t that our job? Help our kids develop their strengths to the fullest?

September 15, 2011 at 12:33 pm
(5) Lisa says:

Virginia – I completely agree with you in theory. In fact, however, if a child is in 40 hours a week of ABA there isn’t a lot of leftover “exploring time.” What’s more, if you’re paying for the service out of pocket, there is NO leftover “exploring money.”

I think that what happens to autism parents is that they pick a therapeutic approach that seems right to them, and they invest so much in it in terms of time, money and hope that they really find it hard to say “oh well, it wasn’t a great match – let’s try something else!”

Lisa

September 15, 2011 at 2:12 pm
(6) Sandy2000 says:

One can look at all the studies, but none of it will determine the outcome for an individual child. Many people will pump one therapy over another, 40 hours of ABA doesn’t even seem natural. 30 hours doesn’t seem natural. I would not want my child to had spent that much time a week with a therapist. It has seemed to me for years that 40 hours really is only supporting a 40 hr work week for the therapist while other children who never had ABA never had ‘a compromise in the child’s outcome’ and progressed quite well with other options. It’s statements like that from opinions which creates that fear and anxieties for parents. An opinion peace in the Medical Journal of Australia is just that, an opinion. ABA isn’t yet as regulated as it should be and there is still people out there claiming to be qualified ABA therapists when they are not. That also creates that fear and anxiety for parents, did they just waste their child valuable time and now they’re outcome will be compromised?

Lisa did in fact include ABA with at least 10 other available options. Lisa would be safe to tell her readers there is no set intervention that will give the same results for every child, if there was, we’d all be doing it.

September 15, 2011 at 6:50 pm
(7) jodifla says:

This was a pretty surprising post by Ari Ne’eman about the efficacy of ABA:

http://thinkingautismguide.blogspot.com/2011/09/ari-neeman-at-syracuse-university.html

I’ve had occasion to talk to talk to with some of the children — now adults — that Lovaas classified as “recovered” Autistics, and it’s very interesting, because many of them are re-diagnosed later in life, or realized that they are still Autistic — because this idea of “recovery” is somewhat of a silly one. And they still suffer from the post-traumatic stress of being taught at a very early age that the most natural way of being that they have is wrong. It’s not something that might cause problems in certain contexts, like a job interview; it’s not just something that sometimes people will hold against them because they have prejudices — it’s wrong. And the way that they can be right is by trying to be like other people.

September 18, 2011 at 3:33 pm
(8) Dee says:

The comments actually indicate that there might be some doubt to his statement given the fact that their identity has been closely kept. I actually know one of the people who worked on the follow up in the 90s and also someone else who actually met three of the now adults… They didn’t view the therapy that way at all according to their answers to very specific questions about this. Also ABA therapy from 1987 just doesn’t look like that anymore. It just doesn’t. Although the idea of creating “robots” still is a prevalent myth, ABA, is simply scaling prompts and reinforcers… Something all of us do all of the time. The curriculum should be focused on the individual needs… I grant you, it’s often not the case… We have been very fortunate to have exceptional and creative curriculum.

September 17, 2011 at 12:29 am
(9) LoRenzosVoice says:

My son will be six in Dec. I have not even gotten a diagnosis yet. They went from saying he had a possible ASD to PDD to Global delay. He just started speaking in short sentences, he is attached to a green tshirt and shows sensitivity to certain sounds and textures. He has horrible chronic constipation. He had been in speech, OT and PT since he was a little under 3. I don’t feel guilty now but I questioned my pregnancy for a long time. LoRenzo’s happiness means everything to me. We learned that he could read so even though he wouldn’t speak to me he would read everytime.So as his mom I wrote on cards and stuck them everywhere. The cards were the beginning of sentences that he would have to finish.”Can I have…” “I want…” “Im sorry for…” I realized no amount of therapy could help if I wasn’t an active parent. The final diagnosis isn’t going to change my sons situation, its just a label. I’ve tried diets that made us all miserable, and that was it outside the realm of traditional therapy. Regardless of what is offered as alternative therapies, we as parents know our children.LoRenzo is finding his voice because I’m paying attention and participating in his therapies. I’m bringing his therapy home. He’s happy. I’m happy.

September 18, 2011 at 4:29 pm
(10) Dee says:

For me, the guilt comes from this idea that if you have the “right” interventions, early enough, and enough of it, you can alleviate many of the symptoms, struggles… Recovery, have an optimum outcome… Whatever you want to call it. The latest research is showing that between 5-23% of kids can “lose the diagnosis” by seven. It feels like a narrow road, especially when you start, and if you do it right (just my perception) you can literally rewire the brain and compensate for the deficiencies.

My anger comes from not having access to all that we need because of our own limited resources, lack of insurance coverage and so forth. 40 hours? We are very lucky to have 8 and at the moment, no speech or OT. We have created a home program, all NET or PRT style which means natural contingencies and much more of a floor time, RDI curriculum. It’s a lot of work!!! Governor Brown has before him an ABA bill for California that I am praying for… It will make a tremendous difference for me and my family.

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