Guest Author - Bonnie Sayers
Every few months I check out the website for the library and use "autism" in my search to see what new releases they have received. Usually they are checked out and I need to place a hold on a copy from another branch since my location does not carry the latest book offerings on this topic.
I was able to obtain a copy fairly quickly of The Autism Encyclopedia and now must return it for another person waiting to peruse through. The Editors of The Autism Encyclopedia are John T. Neisworth, Ph.D., Professor Emeritus and Pamela S. Wolfe, Associate Professor of Special Education. Both are with The Pennsylvania State University, which leaves no impression on me as I am not familiar with this University.
There are nine pages listing the Contributors along with their affiliation and address. These do not include phone numbers or email addresses. Only a handful of these Contributors are familiar to me. These include Simon Baron-Cohen, Ph.D., Carol Gray, Catherine Lord, Ph.D., Donald J. Meyer, M.Ed., and Eric Schopler, Ph.D.
A scan of the Contributors shows they are all professionals in the field, ranging from Psychology Fellow, Licensed Clinical Social Worker, Developmental Therapist, Graduate Student, Doctoral Candidate, Professor, Dean, Psychiatrist to Senior Therapist.
The back cover of The Autism Encyclopedia states " More than 100 respected autism experts have contributed items from various disciplines". I have no clue who these people are and would like to see a list of who respects them and what makes them autism experts. The listing of Contributors lacks those on the Autism Spectrum like published authors and speakers on the topic. It is also evident that the book lacks any input from parents, who are the real autism experts.
The topics listed on the back range from - diagnosis, early detection, legislation, research, signs and symptoms, education, interventions, diet, behavior and daily living. How exactly do these "autism experts" include items that relate to daily living when the parents and those on the Autism Spectrum are doing the living on a daily basis?
While I do have issues pertaining to the Contributors of The Autism Encyclopedia, I still wanted to peruse through to see what terms were listed and if I could gain further insight into the terminology that is forever increasing and changing at the same time.
Two therapies I lack experience in and would like to learn more about were not even listed in this 2005 book. That would be crano-sacral therapy and hyperbaric oxygen therapy (HBOT). Also missing was the mention of chiropractor and developmental pediatrician, although neurologist was listed inside The Autism Encyclopedia. I have heard of many parents seeing a Chiropractor for their child on the Autism Spectrum.
Here is a sampling of what will be found listed in The Autism Encyclopedia:
There are twenty-one pages of references, a screening and assessment tools and curricula - this is thirty pages for Appendix A. This includes the age and date. There are no corresponding websites or ISBN numbers to actually find these tools. Appendix B consists of fourteen pages. These do have websites, email addresses, fax numbers, address and phone numbers.
Although The Autism Encyclopedia is marketed as a book for parents and professionals it is highly technical with lots of jargon that is not necessary for a family to have to sift through. At first I thought this would be a suitable book for a family to give to relatives to understand more about the terminology, but it could become overwhelming to see all these terms and wonder where they fit into the equation for a family member.
There were many listings that should have been included that were overlooked, and these would be most helpful to families that actually are raising the children on the Autism Spectrum. Instead this reads more like a book that all the professionals who contributed could keep on their shelfs and use these words in assessments that have little meaning to the parents reading them.
After reading through The Autism Encyclopedia over the last three weeks I feel this statement on the back cover is not exactly accurate, " This one-of-a-kind encyclopedia is a clear, comprehensive guide to the wide range of terminology related to autism spectrum disorders." It goes on to further state, " Every professional whose work involves autism spectrum disorders needs a copy of this essential resource - to keep on hand as a daily reference and to share with patients of children who have these complex disorders."
I found the terminology itself to be complex and over the top. References going back to 1965 are really not necessary in 2005. If you want to market a book to assist families you need their input before the book is published.
Here is an example from "naturalistic interventions - Techniques and/or strategies that occur in a natural environment (e.g., class-room home, community), rather than in a decontextualized setting" I have no idea what decontextualized setting means! My nine year-old son Matthew is nonverbal and I have yet to hear this term - " protodeclarative - Pertaining to early vocalizations or nonverbal language used by an individual to get another person to look at or listen to something."
Another term referenced in that term is " Protoimperative - Pertaining to early vocalizations or nonverbal language used by an individual to get a person to obtain what is wanted; requests". Abbreviations are also listed - IFSP, IPE, UTP, IWRP, IPG, FBA, FCT, EO, BCABA, AT, IPG, LEA, NNP, SPECT, SEA, VB, CRC, TLK, VSM, TSS, ZPD.
In my opinion the terms are geared for professionals, written by professionals. Perhaps it is time for the parents to offer their perspective in a similar compilation. At some point in time I will probably purchase a copy of The Autism Encyclopedia. I like the idea of utilizing some of the terms for meetings and to include in an IEP, stump the professionals or as some say the autism experts.
Don't let my thoughts sway you away from purchasing your own copy of The Autism Encyclopedia and make up your own mind on whether these autism experts covered all the terms parents need to raise a child on the Autism Spectrum. This is available at Amazon.
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