[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
AUTISM: WHAT DOES THE FUTURE HOLD;
WHAT CAN WE LEARN FROM THE PAST;
AND WHAT CAN WE DO RIGHT NOW?
“We went to the biggest university in the city. They were supposed to specialize in developmental disorders. After the diagnosis, we came out into the hallway, and I sat down on the floor while our two year old ran around. I said to my husband, ‘I wish they had said he had cancer.’ Then the medical community would embrace us and offer us everything it has to help our child. At least then I would know what to do.” –Ricki Robinson, M.D.
What struck me more than anything as I read The Future of Pediatrics articles was how much there was to say about diseases like asthma and diabetes, the fields of gastroenterology, cardiology, and other major areas of pediatric illness and how little there was to say about autism.
The astounding thing about autism is that today, in the year 2000, we know exactly three indisputable biological facts about autism: 1) it strikes before the age of three, 2) it effects four boys for every girl, 3) it causes severe impairment in social and communication abilities.
Today, there is still no biological marker for autism, no blood test, no genetic marker, and no known cause. And yet early studies demonstrate a 90 percent concordance rate among monozygotic twins, making autism likely to be the most heritable of all neuropsychiatric disorders.
A BRIEF HISTORY
Why has such a common and devastating disorder received so little attention from the scientific and medical communities?
First described by Leo Kanner in the early 1940s, autism was estimated to effect approximately two to four children per 10,000. Today, that number has been increased to 1 in 500. It is not currently known whether this apparent increase represents an epidemic scale increase in the occurrence of the disease itself or is simply the result of better identification of the disorder. One thing we do know is that there are far more people with autism than we ever realized; autism is not a rare disorder.
For forty years after Kanner first described the disorder, autism was wrongly believed to be an emotional disorder, caused by bad parenting. In retrospect we can see “bad science” at work: an unproven hypothesis that drove an entire generation of researchers in the wrong direction and resulted in an entire generation of children with autism being deprived of the benefits of medical and scientific research.
A few early biochemical studies peppered the otherwise bleak research landscape of the ’60s, ’70s, and ’80s. High platelet serotonin among a subgroup of autistics and their first degree relatives has been the most intriguing replicated finding in early and more recent studies. What other research there was largely focused on alleged social and emotional causes. A few early neurobehavioral studies used methods such as conditioned electric foot shock to study autistic children who, when pulled out from the wards of state mental institutions, sometimes at ages as young as five years old, were considered hopeless cases. Less than a generation ago, severe self injurious behavior and apparent mental retardation were considered the norm for individuals with autism. The concept of intervention, much less early intervention, did not exist and children with autism were left during their most formidable years of early neurodevelopment to reinforce their own abnormal neural circuitry, thus sealing their fate of living in a separate and isolated world that would last a lifetime.
By the late 1970s, autism was finally recognized as a neurobiological disorder but then the tragedy of the previous decades was followed by yet another: autism was declared incurable.
Before turning to the future of autism, it is fitting that we turn to what is currently known, for we have yet to implement what is already known about appropriate screening and treatment for these children.
THE ROLE OF THE PEDIATRICIAN IN AUTISM
A parent concerned about a toddler’s development will usually voice that concern to the pediatrician first. The primary role of the pediatrician in autism is early identification of the child at risk.
Traditionally, pediatricians have been hesitant to apply labels to young children and have taken a “wait and see” attitude. Once the diagnosis was made, pediatricians often encouraged parents to “adjust” or “get used to it.” Not surprising, since early studies stated that half of all children with autism would not be able to speak and three quarters would be living in an institutional or group home setting by the age of 13.1
Current concepts in neurodevelopmental biology, however, suggest that the key factor for improved outcome in the developmentally delayed child is an intensive early intervention program. Efficacy will be improved for the child who is still in the most plastic period of brain development when treatment is initiated.
Although significant improvement is possible, the course for the autistic child will be long and hard and will impose enormous strains on the family.
Studies confirm that it is imperative that autism be identified early so that appropriate treatment can be initiated
Yet even today, parents may leave their doctor’s office with the advice that autism is a life long disorder, with no known cause or cure and that they should join a support group.
Although significant improvement is possible, the course for the autistic child will be long and hard and will impose enormous strains on the family. Therefore, the message for parents of a child diagnosed with autism should be one of hopefulness, encouragement, and support:
Autism can be treated.
The earlier interventions are initiated, the better the autistic child’s outcome may be.
The child with autism can learn.
Every child with autism has the potential to improve.
Three major issues face the pediatrician who is seeing children with apparent or confirmed autism:
|1.||How should the clinician identify and diagnose autism as early as possible?|
|2.||What constitutes the optimal medical work up for the autistic child?|
|3.||What interventions, pharmacological, behavioral, or other treatments are recommended for the autistic child in order to improve his or her outcome?|
Identification and Diagnosis:
Autism is a spectrum disorder with symptoms ranging from mild to severe. Other diagnostic categories which may overlap include Pervasive Developmental Disorder (PDD), Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) and Asperger syndrome.
Identification: The CHAT
The Check List for Autism in Toddlers (CHAT) is a diagnostic tool used to identify very young children at risk for developmental delay. The CHAT is a short, simple method that has demonstrated a high rate of success in screening children as young as 18 months for risk of developmental delay including the autism spectrum disorders. 4,5The following is an informal version of the CHAT’s three basic behaviors, which should be elicited from the child by the pediatrician.
|1.||Elicit a pointing gesture from the child. Ask the child to show you an object, or where something is. “Show me the teddy bear.” or “Where is the teddy bear?”|
|2.||Elicit joint attention. Show the child something by verbal prompt and pointing gesture. While pointing at the ball, say, “Look! There’s the big ball!”|
|3.||Elicit imaginative pretend play. Get the child to pretend to pour tea or feed a doll or pretend to sweep the floor.|
If the child does not point or gesture, does not look where you are pointing (engage in joint attention), and does not engage in any imaginative pretend play, the child should be considered at high risk for developmental delay and should be promptly referred to the appropriate specialists for further screening (see Medical Workup below).
Diagnosis: The DSM IV6and the ADI-R7
The DSMIV uses a collection of observed behavioral symptoms including impaired communication and social interaction, stereotypic behaviors, and restricted activities to form the diagnosis of autism and related disorders. The Autism Diagnostic Interview (ADI-R) is a diagnostic tool, which has been studied in depth and is largely used for research purposes. The ADI-R consists of an extensive clinical and behavioral history of the affected child, obtained by parental interview.
In 1997, the Cure Autism Now Foundation (CAN) held a consensus conference to establish a best practices medical work up for autism. They created the CANConsensus Statement (previously published in California Pediatrician Fall 1999).
The following protocol is a condensed outline taken from the corresponding section in the Interdisciplinary Council of Development and Learning (ICDL) hand book, written by Ricki Robinson, M.D. Dr. Robinson is a pediatrician specializing in autism and related disorders whose practice includes over 200 patients with autism. You may find this information by visiting the AAP California Chapter 2 Web site at aapca2.org
|1.||Gillberg C, Wing L, Autism: not an extremely rare disorder. Acta Psychiatr Scand. 1999; Jun;99(6):399-406|
|2.||McEachin, J., Smith, T., Lovaas, OI., Long-term outcome for children with au-tism who received early intensive behavioral treatment. J. Dev. and Learning Disord. 1997;1:87-141.|
|3.||Sigman, M., Ruskin, E., Arbeile, S., Corona, R., Dissanayake, C., Espinosa, M., Kim, N., Lopez, A., Zierhut, C. Continuity and change in the social competence of children with autism, Down syndrome, and developmental delays. Monogr. Soc. Res. Child Dev. 1999;64 (1):1-114.|
|4.||Baron-Cohen, S., Allen, J., Gillberg, C., Can autism be detected at 18 months: The needle the haystack and the CHAT. Br. J. Psychiatry. 1992;161:839-843|
|5.||Baron-Cohen, S., Cox, A, Baird, G. et al. Psychological markers in the detection of autism in infancy in a large population. Br. J. Psychiatry. 1996;168:158-163|
|6.||American Psychiatric Association, Diagnostic Manual of Mental Disorders (DSM-IV).4 th edition. Washington (DC), American Psychiatric Association, 1994.|
|7.||Lord, C., Rutter, M., LeCouteur, A., Autism diagnostic interview revised: A revised version of a diagnostic interview for care givers of individuals with possible pervasive developmental disorders. J. Au-tism Dev. Disord. 1994;25:355-685|
More With Cure Autism Now
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.