Aptos psychologist: Parent-led home programs for children with autism are available & work www.freedomOK.net/wordpress

Through Early Start the regional centers serve many children with social and communication delays. Children do not need a diagnosis of autism or autistic spectrum disorder to receive early start services from 0-3.

In Santa Cruz County, a variety of venders provide services under the auspices of the local regional center. A wide variety of programs are available from P.L.A.Y. – which as its name denotes helps parents to have fun while interacting and teaching age appropriate social and communication activities to their children – to strict ABA type programs such as ABRITE wherein, I have been told, the parent is not permitted in the room during therapy sessions.

Personally, for various reasons I support programs such as P.L.A.Y offerred locally through Easter Seals in Santa Cruz (http://central.easterseals.com). I also support Floortime approaches. One local therapist with Floortime using a DIR approach is licensed MFT Lisa de Faria, located in Scotts Valley. Through her you can obtain other names of competent therapists using the DIR and Floortime model.

It is possible, though not frequently done, for parents receiving Early Start regional center services to create their own particular mix of social skills training, speech and occupational therapy. When people come out to assess, that is the best time for the parent to state that they want to be in charge of the mix of services offerred.

Below is an article by Jill Echer. From her blog: Autism Tomorrows www.autismtomorrows.blogspot.com

What the Psychologist Should Have Said by Jill Echer from her blog: autismtomorrows.blogspot.com

“If psychologists told the truth when delivering an autism diagnosis, this is what they would say.

“Thank you, Mr. and Mrs. Jones, for bringing little Joey in to see me. It was an honor and privilege to spend time with such a sensitive and special child. I know you are concerned about Joey’s social development, and I can understand that; as you know, when we see distortions in social development, we usually give it a label, an autism spectrum disorder. But just because we have a label, that doesn’t mean we understand the problem any more than you do.

I see the same things you saw before you made the appointment, for example, Joey is not pointing to objects and then referencing you, as normal toddlers do many dozens of times each day. He’s not responding to his name or turning his head when you say, “Look at this!.” He does not share and show, or draw attention to himself. He has a few words to label objects but it not engaging in any little conversations or respond to questions. He’s not interested in other children, lacks eye contact, and does not pretend play with toys. I am not any more observant than you, I just have the ability to put these omissions in stark relief by administering some diagnostic tests.

We have no idea why Joey is developing so differently than other kids his age. New theories seem to be developing every day, and just about everyone agrees that autism is a neurobiological disturbance caused by a mix of genetic and environmental factors. Some theories relate to neural under connectivity, neural overgrowth, lack of synaptic pruning, failure of certain neural pathways to develop, weakness of the mirror neuron system, neuroinflammation, mitochondrial dysfunction, even hormonal influence on the developing brain. But in the end, we just don’t know.

I know what you’re thinking: why would a psychologist like me have any business diagnosing and treating a mysterious neurological disorder? That’s a good question. In reality, the field of psychology is completely irrelevant to autism. And worse, and I’m very sorry about this, my profession has a history of doing more harm than good to people with autism, and their families. For decades, from the 50s through the 70s, we routinely blamed the children’s mothers for causing the social withdrawal resulting in autism. Then from the 80s to today most of us have portrayed autism as a behavioral disorder addressable at least in part through behavior modification based on discredited work by someone who knew nothing about autism, named BF Skinner. His legacy is a form of systematic rewards and punishments used originally on dogs and pigeons. Psychologists who follow the behavioral model don’t believe in addressing the core deficits of autism, just shaping external behaviors. My profession has done a poor job of developing or understanding effective therapies; in fact we do very little hands-on work with your kids. Most of our observations come from ivory tower research papers; we remain naive and a bit mystified about how to implement meaningful therapy.

You asked about prognosis. There are few good longitudinal studies examining long-term outcome, but from my experience I see that children with these early developmental patterns have some level of social and sensory difficulty that persists throughout life, although there is evidence that some children do in fact recover. Some individuals move along the spectrum and become quite functional; others are wired in such a way that they always have profound problems relating to our world.

That said, we psychologists have done a terrible disservice by presuming your kids are mentally retarded, when in fact so many people with autism, though nonverbal and remote, have proven to have active and engaged intellects. We know this because many of them have learned to type or point to communicate amazing and complex thoughts. I myself have met several of these kids and believe that a great many people with autism could do the same if given appropriate help and guidance. I am sorry that my profession has perpetuated so many myths about people with autism. Autism for the most part is a disorder of the sensory-social system and not of the intellect.

You asked about next steps. We psychologists usually follow a cookie-cutter approach that recommends a total of 25 hours per week of intervention, including about 10-18 hours per week of ABA and about 7-15 hours of other therapies, including speech therapy, occupational therapy, and play group.

But let me tell you the truth. By running a parent-led home program, you are free to emphasize the critical deficits in autism, namely development of social interest and relatedness. You will have complete control over quality and training of the therapists and the ability to videotape sessions to provide constructive feedback to the therapists. It is not as hard and daunting as it sounds. For one example of an excellent home program, see autismtreatmentcenter.org.

The real issue here is not parent competence, but availability of support and funding, even though 40 hour per week parent-led programs cost one-quarter as much as 20 hour per week therapist-led ABA programs. But because agencies, school districts and insurance do pay for some portion of an ABA program, cost efficiency is a moot point for some families, and I understand that.

You asked about Joey’s repetitive behaviors, like flapping his hands, and sifting sand, and spinning wheels. Well, I know we psychologists have labeled these type of repetitive behaviors as aberrant and maladaptive, and again, I am sorry about that. We have no idea why Joey does these things, but of course these activities have meaning and value to him; it how he is taking care of himself and exerting some control over his confusing world.

We have sought to extinguish these type of activities through behavior modification, but that almost never works. Please look at Joey’s repetitious behaviors as an opportunity to join him in his world, to get to know him better. It’s a wonderful starting point for strengthening your relationship and earning his trust. Do not judge him, after all he is doing the very best he can given his most unusual neural wiring. Your total acceptance will be the best starting point down the road.

For more articles by Jill Escher, go Jill Echer Autism Tomorrows