Guest Host – Autism Discussion Re-Visited

I am honored that Sandy Westendorf has agreed to continue her discussion on autism.

Author of The World According to August

She is the author of, The World According to August – One Good Friend.

Sandy’s book inspired me to write Poem for an Autistic child and has agreed to answer questions related to comments from the introduction of her book.

Interview questions

Your book, “The World According to August” touched me deeply. You give us a deeply personal, yet insightful picture of a child with autism; how he and they are similar in many ways and yet different, as well.

During our previous interview we discussed the reasons you authored The World According to August – One Good Friend.

In that interview you addressed challenges and rewards parents and children themselves faced and stressed the importance of recognizing uniqueness. We ended with you calling on others to learn more about those with disabilities.

Since then our conversations have touched on a couple of topics you feel strongly about. From this point forward, feel free to consider yourself the guest-host.

You and your family have been encouraged by a therapy that you now heartily endorse. Please don’t hesitate to step up on your soapbox. What do you have to say on this?

Correct, the therapy our son made the most significant gains on was the Lovaas Applied Behavioural Analysis therapy, commonly referred to as ABA.  This therapy was developed over forty years ago by Dr. Ivar Lovaas, a world renowned autism expert. Dr. Lovaas’s program was, at the time, the only peer reviewed, scientifically validated therapy. It uses Discreet Trial Training, where new skills are built upon in sequence and each mastered, much like constructing a brick building. The therapy includes Intensive Behavioural Intervention, which helps the child learn to manage their behaviors so they are able to focus and learn. There are many who still believe ABA is based on the use of negative reinforcements and/or the use of aversives, which is not the case. I know dozens of families who use ABA with great success, and not one has ever used aversives. They are not used in a correctly managed, modern program.

In conjunction with ABA we incorporated a play therapy called “Floortime”, which was developed by Dr. Stanley Greenspan. We saw the most gains utilizing these two programs in concert with each other. We explored several options in an effort to find the right fit, trying other diets, supplements and therapies – with little or no results. The one program which worked best for our child was the one we stuck with. It is what works best for your individual child which is the best treatment for them! Every child is unique, therefore, their responses to a treatment will be unique as well.

Parents should investigate their options, research, ask questions, and use common sense. Now we have many therapies, and diets available to families, some better than others. Sometimes it is the combination of programs or diets which  reveals the best outcome.

We discussed a controversial issue related to evidence linking vaccinations to the onset of autism. It might help others if you share what you’ve learned on the subject. Back to you…

This is a hot button issue, with many parents, not just myself.  For years the Pharmaceutical companies have been saying there is no link between vaccines and autism. I beg to differ, as do thousands of other parents, judging by the overwhelming anecdotal evidence many doctors still choose to ignore. I have heard my son’s story repeated too many times to count, by other parents of children with autism. The scenario is all too familiar, healthy, neuro-typical toddler goes to doctor to receive vaccinations (usually it is the MMR), within minutes to hours, toddler appears unresponsive (doctor’s will refer to this as an ‘infant faint’) they cannot explain why the same toddler now no longer speaks, makes eye contact, cries incessantly or in our son’s case has stopped walking.  Beginning in the early 90s the number of recommended childhood vaccines doubled! Thimerosal the preservative used (still in flu vaccines) contains over 49% mercury by weight.  Because of the known side effects of mercury poisoning, which mimic the symptoms of autism, there is now at least one version of the Thimerosal-free vaccines available.  With the huge public outcry against the Pharmaceutical companies, there were studies conducted to determine whether or not vaccines contributed to autism. The findings concluded there was no evidence to support the claims linking autism to vaccines.  Out of the 23 studies conducted, 18 of them were funded by major Pharmaceutical companies.  This appears to be a gross conflict of interest. If the studies were to find a link between autism and vaccines – what do you think the size of the class-action law suit against Pharmaceutical companies would be?  There appears to be no accountability and our children are being hurt.

Do I believe it was the vaccine which introduced autism into the life of my beautiful boy – yes! Do I believe vaccines cause all cases of autism – I don’t know, I only know what happened to my child. I have spoken to a few parents who recognized something different in their child from the moment they were born, but the majority I have had contact with have stories like ours.  Having said this, would I vaccinate my child, knowing what I know? Yes.  I would insist on single dose, no multivaliant vaccines, which are Thimerosal-free, and I would request they be spaced farther apart.  Vaccines save lives – this cannot be disputed. We just have to ask ourselves – how much is too much?

Are there any closing words you want to share at this time?

There is a glut of information out there; it is hard to know what is right for your child. For a parent who has just received the diagnosis of autism, take heart. It is not the end of the world, or the end of your child’s life – it is the beginning of a journey down a different path towards an unknown destination.  It will be rocky, and at times overwhelming, it will also be joyous and beautiful, and you will find your rhythm. Seek out organizations like FEAT (Families for Early Autism Treatment), autism support sites, etc… Don’t be afraid to advocate, strongly if the need be, for your child. You are their voice, their safe haven, and their best shot at a bright future.

.

Additional comments?

I want to thank you for giving me the opportunity to stand on my soap-box and spread the message about people with disabilities. Many do not have a voice of their own. It is up to those of us, who love and care for them, to give them that voice. Parents should know it is okay to advocate for your child, special needs or mainstream. Encourage connections with people with different abilities – it will make all the difference – to you and to them. Eight months after I had finished writing the story and it was in the hands of my book designer, I came across the following link: http://www.wretchesandjabberers.org/screening2.php I was delighted to see other like-minded people. The short clips on the link show two men with autism trying to dispel many of the misconceptions of developmental disabilities. Their message was exactly what mine is – inside we are all the same.

For more information about Sandra Westendorf, check her Purple Birch Publishing Website. For that you can click right here. 

Caveat: Always check with your personal physician or pediatrician for advice regarding vaccinations. Information provided is the opinion of the interviewee and should not be taken as medical advice.

Link to The World According to August – One Good Friend, Trailer.

13 Comments

Filed under Author Interview

13 responses to “Guest Host – Autism Discussion Re-Visited

  1. Another excellent post and wonderful interview!

  2. Thank you Susie, but you know who did all the work on this. I’m an advocate, but Sandy continues to give it her all!

  3. Thanks for hosting this Rich, and thanks for a really interesting interview Sandy. Some of the information and encouragement here could be invaluable to a family with an autistic child. I” be happy to re-tweet this. 🙂

  4. T. James, thank you again. Re-tweet this to you’re hearts content! Thanks for your support and I’m confident I can speak on behalf of Sandy in this regard. 🙂

  5. Rich, I appreciate all your efforts to bring this issue to the forefront. It is one which Big Pharma has done an excellent snow job on. I do support vaccines, but with the caveats listed in my interview. I’m glad your readers are finding the post informative, if we advocate for our children/grandchildren it can only make their future brighter. A sincere thanks to you and your readers for the generosity shown to me, and to this subject.
    Respectfully,

  6. It is no secret that I love, love, love The World According to August – One Good Friend. Sandy Westendorf is a wonderful writer and her heart is as big as her talent! I’m so glad that I have discovered her and her book. Blessings to you, Rich, and to you, Sandy, as we do our best for our wonderful kids.

  7. Sandy and Bobbi,
    It’s an honor for me to offer you a sounding board for sharing your expertise and advocacy for this cause that means so much to you.
    You can be assured that my offer stands. Anytime you’re interested in sharing your thoughts on these matters just let me know!

    All the best to you,
    Rich

  8. Hello Rich, and Sandy. Thank you for this post, it is good to see such well-informed and balanced views and advice on issues that touch more of us than most people realise. It think it will be a great comfort and source of inspiration to many, so I retweeted it from your site earlier today when I first read it. Best of luck with your book, Sandy, and warm greetings to you Rich. Trish.

  9. I looked up the first interview with Sandy before reading the one above. What an interesting insight into the world of autism. Parents are so knowledgeable, having observed their children first hand for many years and this interview shows how much we can learn by listening to what they have to say.
    I downloaded ‘The World According to August’ on Kindle and posted the Amazon link on Twitter.
    Good luck with your book, Sandy. Great interview!

  10. wonderful interview. in my field, i either encounter parents who are one-hundred percent against vaccines or 100% for. in your case, it’s very unusual for me to hear from a parent who believes vaccines caused autism in their child to still believe children should get vaccinated. i appreciate your candidness and clearly well-thought out , educated position on vaccines. thank you for sharing….i hope to be able to direct other parents to this post who are in similar situations, when the issue arises in my therapy practice.

    • Hi Jeannie,

      Nice to meet you! I think you must look at all the factors and then put aside your emotional brain (not easy to do) and look at it logically. For us, there is no denying the physical and developmental issues which were not present even minutes before we had our son vaccinated. Personally, I think the responsible thing to do is vaccinate but a parent should check their options. Research, and discuss with their child’s primary health care provider. In the end, the parent is the one who decides. Don’t be bullied into doing something you’re not comfortable with but also make sure you have the latest facts. Thank you for your kind remarks. I hope our story will help others who are struggling with the diagnosis.

  11. Trish and Michelle,
    Thank you for the kind comments. I’m so happy I have been able to provide a little insight into the world my son lives in. It gives me hope, when I see people respond so generously.
    The best to both of you~
    Sandy

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