T h e C h r o n i c l e s o f A u t i s m
Autism is a neurological disorder about which very little is known. What we do know is that people with autism have problems in the following areas:
A. Communications. The "output" of an autistic person is limited or non-existent (approximately 70% are nonverbal).
B. Processing of information. Autistic persons think differently from us.
C. Sensory balance. The autistic person typically has a lower tolerance for sensory input and his receptors are easily overloaded.
Contrary to the commonly held opinion, people with autism have a normal spread of intellectual ability. They can learn, develop, and make progress. But because they are communicatively challenged, they are often mistakenly thought to be of low intellect. The reprehensible lack of expertise in the medical and scientific world, combined with the absence of biological markers, contributes to misinformation, misattribution and the general misunderstanding of the autistic community. This leads to unnecessary medical interventions which, by spreading inappropriate treatments or medications, cause additional harm to affected individuals.
In a nutshell: the absence of social interaction, effective education and normal childhood experiences, coupled with outdated and damaging behavioral techniques (“training”) along with the use of “off label” medications, all combine to excessively complicate a neurological condition that has yet to be properly understood.
The Brutal Reality of Autism
In most cases functioning normally at birth, at around the age of 2 the child suddenly loses the language he has acquired and disconnects from his environment.
“Your child has autism. We don't know much about it and there is little we can do”. This sentence, or some variation of it, is what most parents hear from the doctor who diagnoses their child.
This is the beginning of a long and difficult journey for both the child and his family. None of them has a clue what their life will look like from now on.
In most countries at the age of 6 the child starts elementary school and becomes the responsibility of the education ministry. In approximately two thirds of the countries, this is the time that the child is re-assessed to see whether he is in fact autistic or should be classified as retarded (determined by an IQ of less than 70). Most experts claim that 70% of people with autism are in fact retarded. Looking closely into the CDC numbers, we find that 70% of children with Autism Spectrum Disorder (ASD) are nonverbal. Since there are no biological markers for autism, this shows clearly that the only real parameter used for distinguishing between autistic and retarded children is whether or not they can talk.
If the child’s diagnosis is autism, he will either be sent to a dedicated school for autistic children or placed in an integrated class in a main-stream school. If he is nonverbal, he will be placed in a special education class, alongside children suffering from all sorts of other disabilities that society defines as retardation.
This will be the child’s first shock: after making some progress in a special kindergarten where in most cases he receives high quality services, he now finds himself in an arid environment. If he is sent to a dedicated school for children with autism, he will spend his days in isolation undergoing "behavioral training" by a method known as ABA - Applied Behavioral Analysis. He will be trained the same way we train animals and will not actually learn anything. If he is placed in the special education class of a mainstream school, he will be treated as if he were retarded, just as the children of the deaf community were treated 20 years ago.
We take an intelligent child; we exclude him from society, deprive him of the opportunity to learn and neglect the real problem. The result: a huge increase in the complexity of autism and deterioration of the child’s behavior as his response to the untreated problem.
Although he understands everything going on around him, he has not been given any way of communicating; he has no social life, and gets no help in balancing his overwhelmed sensory system.
At the age of 7 - 10, the cute little boy can still be controlled. When he turns 12 he falls into the next trap, more mature and with better insight into his condition. Surrounded by people who treat him as retarded and who don’t believe in him or his abilities, he is tortured daily with attempts to modify his behavior. The child’s frustration level soars and the only way he can express this is by acting up. Add to that puberty and what you get is a perfect storm of autistic adolescent.
At a critical stage of life, 12 - 17 many of these teenagers are left to struggle on their own.
Few teachers of children with autism have either the experience or the training to work with this age group. Since they can no longer control the young persons in their class, the schools take the easy way out and summon the doctor. Along comes the medical establishment with its heavy artillery of off-label medications, with one goal in mind: to achieve peace and quiet. This is the practice, despite the fact that the medical staff doesn’t know or understand anything about autism. An intelligent child is treated as psychotic, but he doesn’t give up easily and keeps on fighting, so the system keeps on punishing him with more restraints and more drugs. These children, who are unable to make themselves understood, have become the new lab rats for the medical community. And if this course of action doesn’t work, the school will expel the child and he will be sent off to a mental institution and locked up for the rest of his life.
By the age of 18, the child is grown up, severely impaired, both physically and mentally. At this point the school tries to prep him for life, meaning trips to the supermarket, bus rides, learning how to make his bed. Further education and employment are out of the question.
At the age of 21, he is an "adult with autism" and has to leave school. There is very little to offer him: he has no career, no social community and no real option to leave his parents’ home. His prospects for the next sixty-plus years of life are dire.
With minimal support from agencies or services, and with minimal knowledge, each family starts out alone on a painful journey when their child is diagnosed with autism. No one prepares them for the difficult life ahead and the battles they will continually be waging. So everywhere in the world, each family is obliged to “reinvent the wheel”.
Families rightly believe that their beloved child has the intelligence and the aptitude to develop. However, no one shows them how to help him do so. On the contrary, they are told that their child's capacity for progress is very limited. Autism dramatically changes the life of the child and the whole family. The struggle to provide the best for the child only gets more difficult as he grows up, with the family forced to fight a system that doesn’t know how to get through to their child and is focused primarily on its own interests. More than 87% of parents of a child with autism end up separating; many of the siblings develop their own mental or physical disorders; the immediate family falls apart and becomes isolated from its natural support network of family and friends.
But the worst comes when the child turns 21 and is left without any external support system at all. With the waiting list for hostel or community accommodation so long, this is the stage at which an aging and shattered family has to take on the home care of their young person. In other countries the only option is to send the child to a mental institution. And over everything looms parents' unanswerable question: what will happen to our child after we’re gone?
In the history of autism the parents have always been the driving force for change. But although there are many parents, most of them for obvious reasons concentrate their efforts on finding solutions for their own particular case. It is extremely dispiriting to be seeking a solution for your child when you know that millions of other families are hopelessly looking for the same thing. The fact is that organizations founded and developed by parents the world over have all failed to come up with any real solution. In the year 2020, five million parents will to have to deal with the question: “what are we going to do with our young person/child?” and if things remain as they are today, no one will have the answer.