Dr. God

“Hey, have you seen this guy? We have set up an evaluation with him for next month. “

“Oh no. I haven’t. But, I heard he is good. In fact, I know someone whose child was making no progress and they saw him and the child started talking within a week. Word of caution though. He has a huge ego. Don’t mention anything about the other therapies you are doing.”

This is a conversation I have heard year after year. I think most of them have some basis in fact. The parents most probably did change their methods- medical or ABA wise- and it probably benefited the child. Unfortunately, the great successes children sometimes have cause many a professional to grow even larger egos or worse, to think that they have all the answers to autism.

“ALL YOU HAVE TO DO IS…”

I used to think that all I had to do was find the right “guy” to help us. If I wasn’t going to get my Autism Fairy from God, then I could do what most Americans are good at- I could buy one. I was also under the delusion that those who ticket themselves as autism professionals knew everything that there was. Alas, I learned Autism’s Rule Number Nine: Nobody knows anything and if they claim they they know everything there is to know about autism, RUN FAR AWAY FROM THEM.

Chances are, you may have a child who has an issue that Dr. God has never personally treated and Dr. God may be such an egomaniac that they won’t admit to not knowing what to do and they will fail to find an outside resource or professional to advise them.

Autism is not brand spanking new but treating autism is. People who bill themselves as autism experts can come from a wide variety of backgrounds. Some are Speech and Language Pathologists by training. Some are psychiatrists. Some are neurologists. Some are developmental pediatricians. Some are occupational therapists. Some are psychologists. Some are special education teachers. There is no special degree that makes one certified in “autism”. You can have extensive autism training and take several courses that have autism has a part of their curriculum. However, this isn’t like med school where one gets extensive training in a speciality like cardiology, opthomology, immunology, etc. What does this mean to parents?

Well, it means that a special education teacher can go to an full day inservice training on autism and then start saying, “I specialize in autism”. A teacher, an SLP, or OT can go to a weekend workshop and then say that they are “trained in autism”. An undergraduate can work in an ABA program for 6 months, graduate, and then proclaim herself an “ABA therapist for children with autism” or worse, she or he can claim to be a consultant. A medical doctor can go to a weekend DAN conference and then say that they are a doctor who treats children with autism.

While all of the above examples have some promise (any specialized training in autism can only help) it does not make these people experts. Your medical doctor tends to not know anything about behavioral treatments and how to implement them. Your ABA consultant tends to not really understand why and how medical treatments are affecting children with autism. Your inexperienced ABA therapist, SLP, and special education teacher has only a cookbook for ABA therapy and has no “higher up” to ask important questions to and worse, has no one to be accountable to. Who are you going to bring complaints to if your special education teacher is misapplying ABA? Do you bring it to the school principals who tends to not even know what the acronym ABA stands for?

One of the things that did comfort me about using a Lovaas replication site was that our consultant had to be accountable to the director of the replication site. If I still wasn’t happy, I could take it up with Ivar Lovaas himself. There was a definite TRAINED chain of command. When I had issues with Lukas’ kindergarten teacher, I had to take my concerns to the school principal and it was a complete waste of time. She didn’t understand what a self stimulatory behavior was, what autism was, and what ABA was.

We then took our concerns to the head of special services. She basically told us her hands were tied and that we had to take our problems to the school board because the superintendent didn’t agree with us (another person who doesn’t know anything about autism or ABA). The school board. None of those people knew ANYTHING about autism, ABA, or special education law and yet these were going to be the people to take our complaints to.

Your special education teacher may know what curriculums are out there to teach children with learning disabilities but they often have only surface training in ABA and autism. One of our lead tutors earned her degree in special education and only a few hours were spent on autism and less than half a day’s lecture was spent on ABA methods. Two of our tutors became certified in elementary education and received no autism training and just an hour or two on classroom management and ABA methods.

I advise parents to ask tough questions of people who claim to be an expert helping their child. What specifically are they trained in? How much training have they had in autism and ABA specifically? How many hours have they received training? How many DIFFERENT children have they worked with? Do they have someone who supervises them or holds them accountable? Many ABA professionals can have limited training in autism. The vast majority of “autism” professionals have no real expertise in implementing and running ABA programs.

Through these questions, we discovered that there was no complete package for us to buy. We were going to have to put together a team of experts.

Unfortunately, a team is hardly what we put together. What I had instead was a various alliances and a “an enemy of my enemy is a friend of mine”. Our medical specialist, our pediatrician, our speech therapists, occupational therapists, ABA therapists, ABA consultants, and teachers would never be able to work as a true team. There is no communication between the major players and I really doubt that EVERYONE could put away their egos. Additionally, it would be impossible to have all these people meet together for our workshops. This lack of communication is the least of the problems that a parent may experience when assembling a variety of professionals to help their child.

There may be outright hostility. In our experience, the majority of the hostility went right towards our ABA therapists. Teachers were threatened by the fact that these young, mostly college undergraduates, had a better handle on Lukas and on how to manage and shape his behaviors than they did. One teacher was sure to throw out that it was she who had a masters degree and not our shadow. Our shadow would attempt to show her a functional analysis that we did on a certain behavior and the behavioral plan that we were implementing to improve the behavior. The response we got from the teacher? “I don’t care. The next time he wanders the hallways because he doesn’t want to come to class, I will send him to the principals for punishment.” This wasn’t about Lukas. This was about professional ego. She was angry because Lukas didn’t like her and she was angry that he couldn’t just be “whipped into shape”.

Our ABA consultant was also viewed in a hostile manner by our school district. She was a threat to their egos. They would never acknowledge her expertise in both autism and ABA. When we lodged complaints about the kindergarten teacher we had and when we requested that he be moved from her classroom, the districts response shocked me. They wanted me to fire my shadows and they insisted our workshops take place at the school, during school hours when none of our ABA therapists or even us, Lukas’ parents, could attend. The head of special services told me that “professionals needed to be at these workshops”. Apparently, my consultant’s PhD and training with Ivar Lovaas didn’t count for much nor did her status as a director of a replication site. Unfortunately, it was even worse with our third SLP who was from the school district. She not only insulted ABA on several occasions but had no interest in learning what we were doing and why. She felt that she knew EVERYTHING about language development and socialization. I also made her uncomfortable when I asked how she assessed the goals and how many times she targeted each specific goal.

Many school districts, Speech therapists, occupational therapists, teachers, a medical specialists are hostile towards ABA. For whatever reason, these groups have chosen to not just ignore Ivar Lovaas study on being able to get 47% of these kids to normal functioning but they have chosen to ignore DECADES of proven research that shows that ABA is effective. I found myself fascinated that our medical specialists were also not entirely supportive of ABA. They had so entrenched themselves in a “this is a medical issue” position that they denied the need for educational rehabilitative therapy.

Even our ABA consultants weren’t entirely angelic. They have a tendency to not care for speech therapy, occupational therapy, and medical interventions. I understand where their lack of confidence in ST and OT come in. For years, these “child led” ideas have often been a waste of time for children with autism, especially when they were placed in group sessions. However, ABA consultants do have a tendency to view language as merely behavioral and they don’t always have a good understanding of speech acquisitions and speech disorders. While I understand the ABA consultants suspicion of Sensory Integration Therapy because of its lack of controlled studies, I also think that a good Occupational Therapist can help you understand where your child is in terms of fine and gross motor skills. They often can work better on developing appropriate skills for handwriting, cutting, and even physical play skills like swinging , running, jumping, hopping, and skipping. Additionally, if we had not chosen to take our child to a medical specialist, chances are we would not have discovered his celiacs disease, his high HHV6 titers, his anemia, why he was suffering from chronic ear infections, skin rashes, and bowel issues. All of these MEDICAL issues can not be treated through discrete trials of ABA. There is no proven “drill” to make a child not anemic. Just because a child has autism, it does not mean that they have to put up with chronic illness.

I knew that among education experts, SLPs, Occupational therapists, psychologists, and

ABA consultants there was a wide range of disagreement with each others methodology. What surprised me was the growing tribal factions within groups.

One such area is ABA itself. For many years, Ivar Lovaas’ methods were about the only methods of ABA out there. Perhaps this is why so many people tend to refer to ABA as “Lovaas therapy”. ABA is not just Lovaas. He is merely one man with a lot of good solid work to show that ABA works. Some newer ABA methods out there are Verbal Behavior (also called Partington Sundberg Method, S/P method, Carbone McGreevy Method), fluency instruction, pivotal response, etc. These are all solid ABA methods. However, not all behaviorists who specialize in autism can agree on this. The Lovaas camp will not allow its replication site to steal productive methods from the VB group. The VB group has this odd idea that EVERYTHING must be done in a naturalized setting with errorless learning. The fluency instruction people tend to not admit that sometimes, even with proper reinforcement, such drills might cause certain children to not WANT to talk. I have heard some ABA consultants refer to the other methods within ABA as “fads” or “watered down” ABA. I have also heard some very defensive consultants refuse to answer critical questions about their methods and even snort to parents, “Just do it my way and you will see.”

This in-fighting is not limited to ABA but can also be seen in the biomedical community.

Two major groups to have formed in this area is the DAN (Defeat Autism Now!) group and the NIDS (Neuroimmune Dysfunction Syndrome) group. Unfortunately, many of these doctors are not local to most parents. If parents enlist the expertise of these groups, then they need a local doctor (such as a family doctor or pediatrician) to order blood work that both DAN doctors and NIDS [1]doctors require. Pediatricians tend to be highly suspicious of any “biomedical treatment for autism” and often refuse to coordinate care for parents between these specialists. Part of their lack of support is understandable. They often have to deal with insurance companies since many of the DAN doctors and NIDS doctors do not bill insurance companies. Additionally, they are at risk for lawsuits. Since the AMA (American Medical Association) and the American Pediatrics Association does not support any of the biomedical treatments being used in Autism, they don’t have a clear directive. More often than not, DAN doctors and NIDS doctors usually do not communicate with local pediatricians. DAN doctors do not always agree with the NIDS organization just as the NIDS organization is often lobs insults at the DAN organization. It is really quite a sad state of affairs for parents to see. Both groups are full of educated, scientists and medical doctors. Some of what they do overlap (yeast overgrowth treatment, antiviral treatment, possible SSRI usage, diet, etc) some of what they support are at odds with each other: chelation therapy, vitamin supplements, IVG, secretin, etc.

So what is a parent to do?

The answer is simple but hard to execute.

Keep your head low and duck.

Sit down and honestly assess your child. For our child, ABA and Biomedical treatments were necessary. These were two areas we needed a professional in.

I learned to put both the ABA consultants and our NIDS doctor on extinction when they exhibited bad behavior. I ignored the swipes taken at each other. I also learned to nod my head and say “uh-huh” as a behaviorist would talk about biomedical treatments. I admit that it took me longer to learn to put my biomedical specialist on extinction when he would rant and rave about ABA. It took skill to learn to not get angry and to steer the conversation back to what he did know- health and medicine. It was ironic that I wasted one consultation arguing about ABA- especially since I was paying this professional for the consult and the consult was suppose to be about my son’s physical health.

I learned that a good SLP can only help but a bad SLP is not worth the time. I decided that I could not afford to pay eighty dollars and hour for a private speech therapist. We had an excellent speech therapist provided by the school district for an hour a week. It was 1:1 therapy and what clinched the idea that this hour was well spent was that this speech therapist wanted to know what our ABA team was working on and her goals complimented our goals. She would also check for generalization of ABA skills. A speech therapist who is skilled can be a valuable asset to an ABA team. She can help direct what is developmentally appropriate in speech acquisition, check for generalization, and be a tremendous support to an ABA team. However, an SLP who is hostile to your ABA program, who has limited experience in Autism, or worse, who has an ego, is not worth your time, money, and more importantly, the hour or two your child spends with this person may be better spent just increasing ABA hours.

You simply have to decide :

What does your child NEED?
Who can direct you in fulfilling that need?

As for the rest, just put the behavior of professionals on extinction. If your SLP or OT starts to bash ABA, just ask questions specifically related to OT and ST. If your ABA consultant starts bashing your biomedical doctor, just ask how to specifically teach a certain skill and ignore them. If your biomedical doctor starts to think they know how to teach a skill, smile and ask about the latest blood test. It is not worth your time to change their minds. It is not worth the stress. You can not change the world. You can not bring together professionals in a show of unity for your child. There will be no moment of everyone sitting around a campfire singing and marveling over your child. Autism is a business where careers are booming. Autism is need of a giant “ah-ha” discovery which will , when it happens, result in a HUGE success for the person who does it. This alone places your child in danger because he may become more about money and ego than about his own well being.

Stop a moment before you meet with a professional and remind yourself that you are paying for this professional! They are not here out of the goodness of their hearts. You are a client. You are to be valued. You are paying for their services. Parents tend to be so grateful that they have found someone to “help” them that they forget that this isn’t charity. This is a business.

Remember that. You are paying for a service- even if it is a school district. Your taxes are paying for this. Take what you want from them and simply leave the rest behind.