For us the first big shock came at Charlie’s four month check-up when his pediatrician told us he had craniosynostosis and might need a major operation. The news broke us down and stripped us bear. We pulled ourselves together for our son and got through the moment when we had to hand our 5 month old baby over to the very capable hands of a pediatric neurosurgeon.
The unfortunate part was in thinking we had been through something. it was over. we were on the other side. our child was “fixed.” and then our nearly 2 year old evaluated at the level of a 1 year old in the areas of cognition. speech and self-help/awareness.
Being the mother of a child with a diagnosis I am completely and utterly disgusted by the NY Times article; New Definition of Autism Will Exclude Many, Study Suggests by Benedict Carey which addresses the “proposed changes in the definition of autism.”
According to this article, the American Psychiatric Association is preparing a fifth edition of the Diagnostic Statistical Manual of Mental Disorders which is noted as a standard reference for mental disorders which drives research, treatment and insurance decisions. It is expected that for the first time in 17 years the definition of autism will be constricted in order to curb the increasing rates of diagnosis.
The question becomes just how severely will the definition change?
Primarily the new interpretation will eliminate the Asperger and pervasive developmental disorder, not otherwise specified or P.D.D.-N.O.S. diagnoses completely by consolidating them into the umbrella of autism spectrum disorder. Currently if a person exhibits 6 or more of 12 behaviors they can qualify for a diagnosis. The new guidelines would require a person to show “3 deficits in social interaction and communication and at least 2 repetitive behaviors.”
So what does this mean? Why should we care?
Carey makes reference to a study done in 1993 which focused on 372 children and adults who were considered high functioning. If those individuals were to seek a diagnosis under the proposed redefine of autism spectrum disorder, 45 percent of them would not qualify.
In this example almost half of the children and adults would be cut from special services. from the help they so desperately need. “The major impact here is on the more cognitively able,” said Dr. Volkmar, an author of the proposed changes. In this case Charlie would be one of the children left behind.
What really makes the bile rise into my throat is the classic example which this action represents; autism and autism spectrum disorders, Aspberger’s, P.D.D.-N.O.S. are on a dramatic rise. It is estimated now that 1 in 100 will be diagnosed, under the existing guidelines. So in order to reduce the amount of people diagnosed. The powers that be will simply make it more difficult to be diagnosed. An easy fix to a not so easy problem. If I want to weigh less I can easily adjust my scale backwards so that it reads less when I get on it rather then commit to a diet and exercises program. and not worry about why my pants no longer zip up.
If an individual is caught shaving points in a sports game they are thoroughly vilified, a la Pete Rose and with billions of dollars in gambling money at stake the indictments are swift. But here we are talking about government sponsored “point shaving” from millions of children and adults with no one to stop it.
Before Charlie started his state early intervention services life could only be described as difficult because words could not do justice to what we were going through. Constant 24 hour screaming. crying. tantrums. hitting. kicking. punching. A year ago Charlie’s only word was “NO” and he lacked every form of communication including primary ones like pointing. He was completely unable to attend. to transition. and to listen and he was constantly putting himself in danger he was unable to understand.
I developed a way in which to just get through the days. I avoided tantrums at all costs and essentially gave him whatever he wanted. the second he wanted it. without him ever needing to even attempt to ask. As a mother you know what your child needs and wants intuitively so it’s easy to become a crutch for them and their development.
I consider us lucky. Charlie qualified for and recieves developmental/behavioral, occupational and speech therapy and we are happy to pay a cost share for those services. Those who will be affected by this are not lucky. They will suffer. alone. without the guidance of those who know better and are educated in these areas.
Charlie is now able to speak with his ever growing vocabulary. His “subtleties” make his language highly rigid in its function but he is no longer tantruming all day. every day. He can tell us what he wants and what he likes. He is now able to somewhat regulate himself and his sensory system and has learned how to calm down. His ability to listen. to follow direction. and to attend has drastically improved and these are just a few of the positive changes we have made through therapy and in April he will be transitioning him into the school system. Another state social system.
What the American Psychiatric Association and the whole medical and parental community should be looking at is WHY. Why are the rates of diagnosis increasing at a phenomenal rate? WHAT is CAUSING the increase? I have heard people say over and over again that the rates of autism and autism spectrum disorders are on the rise because diagnoses are on the rise. Basically the idea being that developmentalists are taking any kid with a delay and slapping an autism label on them. I imagine this prejudice to be that of parents of healthy children who know nothing of what having a developmentally delayed or autistic child is like. Or those perpetrated by the media who constantly makes the same case.
We choose what to react to and what to ignore. 1 in a 100 is an epidemic and yet the outrage seems to be saved for the parents of the 1 who are looking for anyway to help their child and other children from having to live within the box of autism.
But WHAT IF there is something else going on? What if there is something to the vaccine debate? What if the round-up ready GMO “food” our food supply is being inundated with is attacking our nervous systems and hurting not just us but our future generations? What if the constant toxic corporate sponsored and government assisted assault on our bodies we take on everyday is raising our incidents of autistic children?
What this issue fundamentally comes down to is money. Special education is expensive. special education teachers and therapists are expensive. Social programs like early intervention are expensive and these things are not just expensive to the parent but the government and state as well in a time when teachers and schools are being slashed. So what is more cost effective than to cut 45% of individuals from budget damaging services!
Why should any child get left behind because his or her delay or disability is not severe enough?
This narrowing of the definition of autism will affect the services these individuals are entitled to. Based on this; children who might be delayed and accepted into a program like the early intervention system will become too “able” to qualify. Insurance companies will stop covering the therapies the child would need which they might have been privately available if not accepted by the state. Parents will either have to pay upwards of a hundred dollars an hour for private therapists or learn how to cope without the help. The developmentally delayed or disabled child will start school with “normal” children their age and will have an intensely hard time adjusting. They will act out or hide inside themselves. Teachers uneducated in areas of special needs will be frustrated by the child’s behavior and the child will probably be pushed through the cracks. The future for a child left behind does not look as bright as that of a child getting the help they really, truly need. To What End?
Why are we okay with this? How is this the way we allow our government to not only treat us but our children. our sisters. our brothers. our fathers. our mothers. our neighbors. How can we continue to let money dictate who is “allowed” to receive help. It is not the definition of autism that needs narrowing in the name of maintaining a more acceptable statistic. The experts say it is unclear as to how the new definition of autism will affect special needs individuals ability to receive important social services but the writing is on the wall. We can only turn our backs for so long while our basic rights as human beings are taken from us and our children.
When the rates of autism continue to rise and services to help these individuals are eliminated. Where does that leave us?