Monday, 10 September 2012 20:24

My Wish List for Doctors Dealing with Autism

Years ago, friends of ours took their one year old severely autistic child to a physician who told them: “Not much can be done, concentrate on your other children.”!

That child did an ABA home program and is now succeeding in college.

I would like to take this opportunity to talk with you about my wish list. These are the main things I wish for, as a parent of a child with autism, from my child’s doctor at or close to the time of the diagnosis.

The main 4 things are: Understanding, Hope, Direction, and Collaboration.

  1. Understanding

    The diagnosis of my child was by far the most painful moment of my life. I think I can safely say that it is an overwhelming and difficult time for any parent of a child with autism. At the time of the shock and trauma of diagnosis, parents may not be entirely reasonable. We may not be completely sane or rational. It may take us some time to adjust and we may have unusual reactions. Please be understanding and give us some time. We will hopefully be rational soon. We may need some time, but not too much time as we have to get to work for our kids. {Dr Diane Munz’s suggestion of a follow up appointment in a month’s time after the first recognition of a developmental delay is a practical application of this wish.}

  2. Hope

    I would wish to hear from my son’s doctor that there is hope for my child.

    There are many things to do for our kids that can help a great deal, and the sooner we can start doing them, the better. As Temple Grandin said in “The Way I See It”, the worst thing you can do is nothing!

  3. Direction

    By direction I mean please point me in the direction of things that will be helpful for my child. Specifically, I would like a descriptive list of treatments and an evaluation of each one according to solid research. ASAT (The Association of Science in Autism Treatment) has such a list on its website).

    I would also like to have in my hand a list of resources for evidence based service providers in the region where I live.

    I would like to know that many parents take matters into their own hands as the public system is slow has many problems.

    I would like to have an idea of what the steps are (in getting an official diagnosis, government support, etc) and about how long they will take.

    I would like some ideas of what would be helpful for my child while I am waiting for services (for example practice imitation, or now I would say, get an iPad and download appropriate learning apps – but don’t confuse an iPad with treatment, it is a tool, not a treatment).

    I would like the phone number of another parent willing to talk to me who has had success with their children’s evidence based treatment.

  4. Collaboration

    I would like for my child’s doctor to be a helpful collaborator in the treatment plans I make for my child. Let’s be on the same side, on the same team facing the problems together.

    In addition, some other things that would really be great are:

    • An ability to detect the signs of autism at a very early age
    • A non-judgemental attitude towards parents
    • Skill in dealing with the child

    One more thing, I really hope no doctor says “let’s wait and see” anymore if there are signs of a delay. The early years are very precious. If we could have gotten started when my son was 2 or 3 instead of 4, we might be a lot further ahead now. No family effected by autism can afford to wait and see.

    Thank you all for your interest and for helping special needs children and their families. I see it as a very positive sign that you are interested in hearing from parents like us.

Here are a few resources that I have found helpful and that may be of interest to you:

Doctors please view this video that can be found on youtube by Dr Melvin DeLevie, a long-time Vancouver paediatrician with extensive experience dealing with children with autism:
Medicare’s Orphans web series Ep 3 Melvin DeLevie

ASAT – Association for Science in Autism Treatment www.asatonline.org (They have summaries of all the different treatment methods and research – or lack thereof –for each one).

ABA and Autism in MontrealA facebook group for families and therapists

Autism Punditwww.autismpundit.com -Website/blog by Dr Sabrina Freeman

Coffee Klatchwww.thecoffeeklatch.com A website and podcast for and by parents of children with special needs

Lovaas original study - www.lovaas.com/research.php

The ME-list: The ME-List Facebook group is a complement to the original Me-list LISTSERV discussion list on ABA applications for autism, with parent, family and professional members worldwide. The name is derived from Ivar Lovaas, Ph.D.'s book, "Teaching Developmentally Disabled Children: The Me Book".

The RDI Book by Steven E. Gutstein. RDI = Relationship Development Intervention Program

The Way I See It – book by Temple Grandin

Bad Animals, A Father’s Accidental Education in Autism by Joel Yanofsky. There is a selected bibliography on autism in the book. See our website: www.joelyanfosky.com

Bad Animals: A Father’s Accidental Education in Autism

badanimalsJoel Yanofsky tried for years to start this memoir. "It's not just going to be about autism," he told his wife, Cynthia. "It's going to be about parenthood and marriage, about hope and despair, and storytelling, too." 

Additional Information