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Involving Parents in Autism and Therapy

Involving Parents in Autism and Therapy Services is Critical to Achieving Success

The inclusion of parents as therapist is becoming more and more popular as many treatment programs these days are involving parents in autism and therapy.

involving parents in autism and therapy

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The inclusion of parents as therapists is becoming more popular as many treatment programs these days are involving parents in autism and therapy.

To me there is only one thing more frustrating than to see someone in need of help and having the ability help them but they refuse your assistance. Have you ever been in a situation like this. Well if you have children then I’m sure you probably know that helpless feeling.

But there is something worse than that, it is having a loved one such as a child in need of help and the helpless feeling comes from not knowing what to do to.

Unfortunately this is the plight of most everyone who has a relationship with someone afflicted with autism disorders.

This frustration is explicitly outlined in a post on Stanford Medicine where that plight of Janet Cartwright and her daughter, Katie Halpin is related.

“Raising a child with autism is very stressful for families,” says Grace Gengoux, PhD, a Packard Children’s psychologist and clinical instructor in psychiatry and behavioral sciences at Stanford who teaches the therapies. It’s difficult enough to handle the core features of autism — impaired language development, poor social interaction and repetitive behaviors.

But the responsibility to direct the child’s treatment can be overwhelming. It’s not uncommon for families to try a dozen or more therapies, which can range from well-studied options such as speech and behavioral therapies to treatments that have never been scientifically tested, such as vitamin supplements or chiropractic adjustment.

In the post there is news of a program run by clinician-scientists at Lucile Packard Children’s Hospital and the School of Medicine that seeks to help parents become more involved in the therapy of autistic children.

It is important for parents to take part in autism treatment and training a parent gives them the tools and knowledge to not only cope with the situation but to be effective therapists as well.

Three programs, involving only about 100 families so far, offer a way out of the bind parents of autistic children find themselves in — they want to help their children but don’t know how, and medical experts have no ready answers either. One program makes therapy training sessions more accessible by teaching parents in groups.

Another program, which Cartwright took part in, teaches parents how to critically evaluate autism treatments; how to, in effect, run miniature scientific studies on their own children. A third small program teaches parents socially based interventions based on a model developed by the Pacific Autism Center for Education in San Jose.

Parent involvement is becoming more important than ever. Autism disorders in children provide challenges in therapy that are unique and require more than just a few short hours a week in a clinic.

Turning parents into therapists

One reason raising a child with autism is so stressful is that instinct can fail you. Other parents rely on gut feelings, childhood memories and advice from relatives and friends. But if your child has autism, it’s not so easy.

“The things we’re teaching parents to do are quite different from what a normal attentive parent would do,” says Gengoux.

For instance, one therapy Gengoux teaches, pivotal response training, includes exaggerated positive consequences when the child attempts to use language. To conduct the therapy, parents pick something their child cares about and then try to engage the child in conversation about it. If the child makes even the smallest effort to converse, parents respond with lots of praise and with rewards relating to what the child said.

For instance, one boy Gengoux helped treat had never talked to others, yet occasionally said a word or two to himself. “I sat down with his mother and said, ‘OK, we ought to be able to capitalize on this,’” Gengoux says. The boy adored bicycles and would sometimes say “bike,” so they took him to a spot on campus with lots of bicycles and waited until he used the word. “We gave such positive reinforcement by praising him and letting him run over and touch the bikes that he began to understand the benefits of using words and was able to start communicating,” Gengoux says. “He’s now a kid who talks a ton.”

Not all parents are going to be skilled therapists and the degree of effectiveness the achieve will depend a lot on their personal abilities, commitments and facility.

Turning parents into scientists

Whether they’re up to it or not, all autism parents face the challenge of deciding which treatments their child should receive. Although a child’s physicians, teachers and therapists weigh in on this question, the decision-making power rests with parents.

“One of the biggest questions I get is, ‘What do you think about this treatment?’” says Kari Berquist, PhD, who developed Packard Children’s treatment-evaluation group for parents after studying the effectiveness of a similar program for her dissertation at Claremont Graduate University. “Often I have to say, ‘I’m not sure; I haven’t heard of that.’” But lack of scientific support often doesn’t deter parents eager — or desperate — for new ways to help their kids.

“It’s easy to get wrapped up in the fear of the diagnosis and fear of what the future holds,” Cartwright says. Research demonstrating the benefits of early, intense autism interventions has led to more autism services, but has also fed parents’ anxiety about treatment.

“Parents are pouring all this money, hope and desire into these interventions, but then they’re kind of getting stuck,” says Berquist, who completed a psychology fellowship at Stanford before joining the faculty as a clinical instructor in 2011. The trouble with an “everything and the kitchen sink” approach to selecting autism treatments is that it carries constant risks of physical, financial, mental and emotional exhaustion.

Being the parent of an autistic is going to bring challenges no doubt. Not knowing what to do, what not to do, what works and what doesn’t is largely a hit and miss endeavor now. Each child is unique as are the parents, what works for one may not work for another.

Developing therapies is equally a challenge. Funding research, testing and evaluating therapies on controlled groups, it’s a very time consuming project and not something that can be achieved in a short time.

When a treatment proves effective for a large group there is still the hurdle of deciding if that success can be effected in a specific case.

Training and involving parents in treating autism is a far more effective for them to evaluate the success or failure of a therapy more objectively allowing them to save time and money on treatments that are not effective.

If you have a opinion please comment and share with others.

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