When Autism Treatments Don't Work - Your Advice Requested
In addition to the school and medical attention the children are served by a component of B.F. Skinner. I think the procedure is called ABA. When I spent some time with my daughter this summer the person involved with this procedure my daughter was told they did "awesome". When I asked her what her level of "awesome" was she told me they sat for the 45 minute session although with no response. Now this is after months of work.Of course, this grandmother is referring to Applied Behavior Analysis, a well-researched and well-respected treatment for autism. The fact that the technique is well-respected, however, does not mean that all ABA therapists are created alike, or that all children will respond well to ABA.
If a parent sees that their child with autism is not responding to ABA (or any other treatment), but the therapist (or teacher) insists that all is well, it may be time to consider a change in therapist - and/or a change in therapy. A few questions to ask include -
- What are your goals for my child, and may I see them in writing?
- How do you assess improvement? May I see your assessments?
- If a technique is not working well, how do you adjust your approach to suit the needs of my individual child?
- Have you tried complementary techniques to support my child's learning and communication? For example, if a child is non-verbal, is your therapist using picture exchange cards (PECS), keyboards, or other augmentative communication devices?
- How do you reinforce positive behaviors and/or improvements? Do you simply hand my child a bit of food, or are you able to show approval in a way that really means something to my child?
- How do you plan to help my child generalize what he learns through therapy? If he can only say "button" when you hand him a button and he earns a candy for speaking, he's unlikely to be able to use the word in a naturalistic setting.
If, after going through appropriate channels, you get no action - it's time to move on. Even if you decide to take legal action against your school or therapist, there's no need to sit on your hands relative to your child's treatment. There are many different forms of therapy available - even if you choose not to experiment with biomedical interventions. Your child might respond more quickly and more fully to a developmental therapy - or in another setting.
Have you dealt with a situation in which a therapy isn't working - or a therapist isn't doing all she can to help your child with autism? What did you do to change the situation? What worked? What didn't? Share your advice!
Comments
I think you misunderstood what the grandmother said. When she said “no response” she meant there were no inappropriate behaviors during the session. Autistic children often present multiple, competing inappropriate behaviors during one-on-one therapy sessions; these need to be greatly reduced so that language training can be effective. I’m sure that during the 45-min the child engaged in hundreds of approximations to appropriate language stimuli and that each was reinforced accordingly.
DrB
DrB - you may be right, and of course I have no way to know. But I do know from experience that therapists and teachers can often set the bar very low indeed for children with autism.
Terms like “awesome” or “great” can often mean “your child didn’t engage in any overtly terrible behavior today,” which is far from saying “your child is gaining new abilities or skills.”
Since most children with autism CAN gain new skills, it seems to me that benchmarking progress is critically important!
Lisa (autism guide)
I AM A GRANDMOTHER ALSO, MY GRANDSON IS 8 YEARS OLD AND WAS DIAGNOSED WITH AUTISIM LAST YEAR,BUT, THE PROBLEM IS MY DAUGHTER AND SON-IN-LAW MAKE TO MUCH MONEY AND THEY ARE UNABLE TO GET HELP OR MEDICAID. IS THERE ANY PLACE HERE IN THE HOUSTON, TEXAS AREA THAT WE CAN TAKE HIM TO,TO BE DIAGNOSED PROPERLY. THE SCHOOL DOES NOT (NOW) THINK HE IS AUTISTIC,THEY THINK HE IS BIPOLAR. NO ONE CAN GIVE A DIRECT ANSWER TO THE QUESTIONS WE ARE ASKING. PLEASE HELP ME, I LOVE MY GRANDSON AND WANT TO HELP HIM AS DOES HIS MOTHER.
An assumtion (as per Jon B), that “no response” meant no inappropriate behavior was observed is likely, and that one of the first steps to effective therapy is to control the unwanted behaviors, is true. However, I am a firm believer that the variance in skill level of those involved in working with the child, can range dramatically and that we as parents simply can’t sit by and accept potential incompetence. My experience is that in order for teachings and therapy to be effective, they must be measurable and if those working with the child can’t substantiate their efforts with results, then we cannot automaticlly blame the child as being non-responsive, but we must also look and point a finger at those administering the treatment. Often, we simply need the right person to work with our children and there is no simple solution.(trial and error) Personalities often come into play and must be accounted for because working with autistic people requires both a technical approach and an “artistic” component and skill. Therefore, not all ABA therapists and teachers are created equal.
D - I agree completely. And, of course, a therapist who’s wonderful for one child may not click at all with another. I’ve often been surprised that a therapist who comes highly recommended just doesn’t connect with my son… though he’s done wonders for another child (and vice versa).
There are also “natural born” teachers and therapists out there who have the innate ability to connect with children on the autism spectrum. IMHO, “natural born” educators are worth their weight in gold!
Lisa (autism guide)
Sharon - the best way to get an answer to your question is to connect with local families in your community.
Two good options are to find out whether there’s a special needs parents’ group in your school district and to find out whether there’s a local Autism Society of America chapter.
The school group (or even just one good parent contact) can help you to get action from the district. The ASA can steer you to good providers of therapy and medical support in Houston.
Lisa (autism guide)
I can say for my child, when we started early intervention and also two different private therapies, I seen no nothing for over a whole year. Notta, zilch. Al kids willprogress at different rates and respond at different rates. Some times it takes months to see anything, or in our case, over a year.
I can also say that when the private speech therapist took another job, my son did not click with the replacement therapist. All these things can factor in however, one should totally not rely on one therapy to make that difference. Other on-going therapies can be of great help and compliment any other.
I would also clarify what no response means first. A legitimate component of ABA is getting a child to sit and attend, since this is a pre-requisite for school settings and is helpful in teaching the child. However, after months, there should be other goals.
One of the main components of an ABA program should be data collection on each of the target behaviors or goals. Data should be taken each session and graphed so that you can see the results.
Since ABA is so well-researched and I’ve seen so much success with it, I would not give up ABA at this point. Ask the questions that Lisa suggested (they are excellent), and see if you can work things out. If not, try another ABA service provider. If you’re still not seeing results, then I might consider a change in program.
Good luck!
Nicole Caldwell, M.Ed.
Editor of the Positively Autism Newsletter
Just a reminder…ABA is a SCIENCE not for with many different teaching strategies fall under (pairing, instructional control, direct teaching, verbal behavior…). It approaches everything with behavior in mind. We are ALL behavior creatures. If done CORRECTLY, everyone can benefit from at least one or ALL strategies under the umbrella of ABA…even NON-autistic people.
Well, if someone got my kid to sit for 45 minutes, when he wasn’t planning to do so on his own, I’d be jumping for joy… Depending on the child that could be HUGE progress. My experience is grandparents are often far removed from the situation. My mother told my sister that the reason my son doesn’t talk is because I don’t talk to him enough. Odd, since I am quite the chatty person, and I spent much of his toddlerhood waiting for and riding busses with him, where I had nothing to do but talk to him. I had grandmother’s praising me for how I talked to him. If talking to him made him talk, well, he’d be talking as well as my extremely gifted in the language department oldest or my right on for typical development youngest…
actually, I’m thinking we need to skew a bit more ABA. My husband has used some negative reinforcements with him that worked, after months of use - IE he actually started listening to the word ‘no’ some of the time. I have a hard time using anything but positive reinforcement (besides removing him from the situation if it’s dangerous) because I don’t entirely know what is or isn’t within his control. I think his school uses mostly positive behavior supports - redirection and praise, and he’s making progress there as well…
Applied behavior analysis (ABA) always works. It is the applied arm of the basic science of behavior analysis. The basic principles discovered and replicated in thousands of experiments over several decades apply universally across species, but especially in humans.
It’s difficult to draw any conclusions based on what someone says about any particular child and his or her treatment. That is why behavior analysts take data on their interventions and use those data to make future treatment decisions.
It is true that there are some out there who claim to practice ABA, but who not. After all, there is a lot of money in autism treatment right now and many agencies and practitioners are crawling out of the woodwork to get their hands on it. As a result there is a lot of variability in autism treatment.
But, if practitioners are trained well in the principles and procedures of ABA, then it will always work for every child.
Now, because there are individual differences in the rate at which children diagnosed with autism learn, just as there are in typically developing children, then some will learn faster or slower given the identical treatment. But they will all learn.
There are no other scientifically documented treatment because there are are no other treatment based on an already extant science.
Many other treatment claim to have data and may even be able to point to a few published studies, but don’t let that fool you. One has to be a savvy consumer and be able to discriminate god research from shoddy research. And, as I said, if there isn’t an already existing science on which to based the treatment, then it should be viewed with great suspicion.
David - I would guess that ABA “always” works in the sense that people (and animals) are very likely to work in order to win rewards (or avoid punishments). But I can’t agree with the suggestion that ONLY ABA works, or that any other treatment modality is based on junk science.
Techniques like Floortime, RDI, and many of the social skills training methods are based, not on behavioral research, but on developmental research and on pediatric psychology. You’re correct in saying that there are fewer studies supporting their efficacy for kids with autism - but that doesn’t mean they should be avoided.
It’s also important to note that the style in which ABA is presented - and even the goals for ABA - seem to vary quite a bit depending upon the practitioner. If the match between the child and the therapist is poor, the outcomes may be very limited.
Lisa (autism guide)