Disorder is the translation of the English ‘disorder’. William Stillman, a well-known American consultant and author in the field of autism, prefers to speak of ‘difference’. Children on the autism spectrum develop differently. They are characterized by an Autism Development Difference.
The fate of children with some form of autism is largely determined by the parents. Actie bij Autisme is a foundation in the Netherlands, founded by parents of children with a disorder in the autistic spectrum. The foundation is committed to more qualified Applied Behavior Analysis (ABA) therapists in the Netherlands.
ABA is a way to teach children with autistic disorder those skills they struggle with. According to the foundation, ABA is based on ‘the principles of behavior modification, a recognized way to reduce problem behavior with a positive approach.’‘
The foundation also has a strong opinion about Facilitated Communication (FC), a method of communicating with people who can hardly speak or not at all. In this method, their arms, wrists, or hands are held to help them spell a message on a keyboard or point to letters.
According to the foundation, repeated research has shown that social workers rather than children with autism determine communication and that facilitated communication does not improve language skills.
The findings of the foundation are in stark contrast to the experiences of those parents who only managed to penetrate the thinking and living world of their non-verbal children through successful communication.
In A Child of Eternity , Kristi Jorde tells how her nine-year-old Adri was allowed to make an announcement to her mother during the first session with FC. She typed in a series of letters that were easily recognizable as a message: “I JUST WANTED TO TELL MOM SHE IS TERRIFIC.” You wonder what arguments researchers use to prevent parents from reading their own children that they are great.
Children with autism, who were judged to be mentally retarded on the basis of their behavior, suddenly appear to have great language skills and in several cases also special reading skills. This could, of course, be the influence of the one who helps the child develop the motor skills of typing. But this is denied by the nonverbal people with autism themselves.
Stillman, in his new book Empowered Autism Parenting , cites his friend Wally Wojtowicz Jr. who didn’t get access to his parents through FC until he was 25. Wally notes:
Reaching out to my devoted family was easy because they saw the faint spark of intelligence masked from anyone else who believed I was incapable of thinking and incapable of learning anything more than what one would try in a dog.
Foundations such as Action in Autism only cite those studies that put FC in a bad light. They ignore those publications in also highly qualified journals that prove that FC is an efficient, legitimate and viable method of communication. Stillman concludes:
‘This suggests that there is a fear of the unknown and an unwillingness among some experts to let go of control and accept the assumption of intellect in people who are believed to be mentally retarded. For some, will letting go of control and trusting that FC can be authentic and serviceable mean that we will finally be forced to really listen to what people with autism have to tell us? I really hope so.’
Parents are usually the ones who don’t give up hope of getting to their own child. That is why Stillman is a strong proponent of leaving children with a form of autism to experts as little as possible in an artificial environment. As long as autism is primarily seen as a disorder, an automatism kicks in in which experts try to eliminate the disorder as much as possible. But what is and what is not seen as a disorder is determined by society.
Autism is similar to homosexuality. It was once considered normal to develop programs that could help people get rid of their homosexuality. We have now come to realize that homosexuals have a right to their own experience of sex. But we are not there yet in the field of the autism spectrum.
“Allow me to be clear: your child does not need therapy for autism! That is a myth perpetuated by a society that values perfection and tries to create a dividing line between those who are “normal” and accepted and those who are “abnormal”.
What your child can benefit from are traditional therapeutic techniques that are naturally embedded in the flow of everyday life – techniques that involve you, your child’s siblings, grandparents, caregivers, neighbors and others. (…) You know your child best and you as the parent should be actively involved in the process until you become the therapy expert.’
The message of Empowered Autism Parenting is that the primary role of the parent is to champion the child’s rights and serve as his or her mouthpiece until they are in a position to stand up for themselves. In this regard, Stillman insists that the behavior of autistic children is a means of communication.
Methods of reducing problem behavior are counterproductive if no attempt is made to understand the message hidden in the behavior: “Your child’s “autistic behaviors” are not behaviors at all – they are means of communication that tell you that something is wrong. is completely wrong. “Why don’t you come and help me, Mama!”
Stillman cites several examples where he has been consulted to help teams of health care providers decipher their clients’ symbolic communications. Aggressive behavior can suddenly be traced back to abdominal complaints or to a lack of respect on the part of the care provider.
It is also sometimes difficult for professionals to assume that there is nothing wrong in the mind of the adult or child and that autism only limits the means to get the message from the inner world out.
In his earlier book The Soul of Autism Stillman noted that the world needs autism to get back into balance. He did not know anyone with autism who did not declare to some extent that he wanted to share his own gifts and to teach others. Also in Empowered Autism Parenting he emphasizes that autism is a learning process for the whole society: ‘Maybe autism is not really so autisticas it seems.
Let’s consider that your child with autism represents an opportunity to the world to enforce acceptance of and compassion for diversity in the same way that African Americans, Latinos, Asians, Native Americans, and members of the gay community have fought for their right to be different. Be reassured that with due respect, appreciation, and opportunity, your child will change the world in ways that are right, true, and beneficial.”