Parents and relatives go on a fact finding mission to get advice from people with Autism Spectrum Disorder who are accomplished. We try to glean an understanding of the disorder. Since autism is now so prevalent, every day there are more adults with ASD giving their personal testimonials. Today, in fact, I came across the latest testimonial sponsored by Autism Speaks. The author of the piece has only the best of intentions for parents; he encourages every person with autism spectrum disorder to share their stories. Unfortunately, hopeful testimonials from adults on the autism spectrum may be very misleading. These adults who are eloquent enough to be in university or graduate school, probably have Asperger’s syndrome and share very little in common with a child diagnosed with autism; in short, their developmental trajectory may be very different. In addition, the research is clear that no one has the proverbial crystal ball to tell you what your child is going to be like as an adult. Even experts in the field cannot predict outcome.
The only statement with which most can agree in the autism field is that early intervention is the key. Those who have respect for science and understand the state of the science in autism treatments, will all agree that
Intensive Early Behavioral Treatment (EIBI) is the key to success. The studies that have been produced by EIBI researchers make it clear that it takes a few years before any kind of reliable prediction can be made as to 1) whether the child will lose the diagnosis of autism and if not, 2) where the child will be as an adult in terms of independence, capability, and general happiness.
Advice to new parents: forget about the testimonials provided by well-meaning people who have never met your child and get thee to a qualified, behavioral consultant with expertise in Early Intensive Behavioral Treatment! You’ll never look back.
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Comments (2)
Another reason people need to be very careful - not only with first-person testimonials, but also the so-called "Gold Standard" reviews of evidence-based best practices, is the incomplete etiology for Autism (which, IMO, has been set back significantly by the "spectrum" construct.)
I definitely agree about the early intervention comment, but there are other promising (or more than just promising) interventions that have initial research backing up their efficacy. I'm assuming that you're just warning parents against the "alternative" treatments.
All parents have unique stresses as the result of raising children, but what is being done to help parents cope?
My name is Crystal Lee, and I am a doctoral student in clinical psychology at Baylor University. For my dissertation I am studying stress and ways of coping with stress in parents. My hope is to use the data from my dissertation to create an effective way to help parents cope with stress.
I am looking for parents of children ages 5-12 in three categories:
1. Parents of children with an Autism Spectrum Disorder
2. Parents of children with Type 1 Diabetes
3. Parents of children with no diagnoses
If you meet the above criteria, please take this survey, which takes 30-45 minutes to complete: https://baylor.qualtrics.com/SE/?SID=SV_0GJF7ldjuBwBWEk
If you do not meet the above criteria, please consider forwarding the survey to any parents you know that fit the above criteria.
People who complete the survey can participate in a drawing for one of three $50 giftcards to Amazon.com. Additionally, people who refer others to the survey get their name added into the drawing for each person they refer.
Thank you for your time and help,
Crystal Lee, M.S.
Doctoral Student
Department of Psychology and Neuroscience
Baylor University