Steps to Take

Tips for beginning the journey after your child is diagnosed

1. Begin the education process — internet, conferences, seminars, other
parents, etc.

2. Find a doctor who specializes in the biological conditions associated with
autism, not just on treating the symptoms with medications. You will need to
seek out a doctor trained in DAN protocol, at least initially. DAN stands for
Defeat Autism Now.

3. Recommend reading these books as a basic beginning:

  • Lewis, Lisa, PhD. Special Diets for Special Kids. Future Horizons, 1998
  • Lewis, Lisa PhD. Special Diets for Special Kids Two. Future Horizons 2001
  • McCandless, Jacqueline M.D. Children with Starving Brains (Addition IV).
  • Seroussi, Karyn. Unraveleing the Mysteries of Autism and Pervasive
    Developemental Disorder. Broadway Books, 2002
  • Journeys Through Autism. Talk About Curing Autism – available on Amazon.com or www.tacanow.org.

4. Join a Yahoo Group — There are a myriad of autism related groups on yahoo.
The trick is finding one that suits your purpose. I looked for groups that were
like-minded in their approach to diet, biomedical treatments and behavior
therapies. It was the approach I had chosen to pursue recovery for Daniel and I
wanted to learn from other parents what worked in their child too.

5. Start the GFCF diet — My approach to starting any kind of dietary
intervention is to go slow and easy for the parents’ sake. I created the 10 week
GFCF calendar in response to the angst parents had at even starting the diet.
This is a much easier method than trying to eliminate one grain at a time or
trying to do “cold turkey” on diet for your child with autism. The link to the
10 week calendar can be found on several websites. Here is one of them:

  • Click here: TACA Talk About Curing Autism – Gluten-free, Casein-free (GFCF) Diet
    – Suggested GFCF Dietary Calendar – Going GFC

6. Attend a conference on autism — Seek input from every imaginable kind of
specialist on autism. My personal favorite conference forum is DAN conference,
which can be found on www.autismresearchinstitute.org. Click on the Defeat
Autism Now section for a list of upcoming conferences. There is also
www.autismone.org which by far has the most comprehensive list of speakers on
every given topic related to autism. And then you will see many of the same
topics and physicians speak at the National Autism Association conference as
well www.nationalautismassociation.org. There are potentially other venues and
organizations running conferences on autism. It is worth googling to find the
one that suits your immediate needs.

7. Start a behavior therapy program — There are many versions of behavior
therapies so look into not only what is in your area, but what your child needs.
If your child is not progressing on a particular therapy program then do not be
afraid to switch another. Parents often get hung up with their personal
relationship with therapists when they should be focusing on the progress
opportunities for their child. Like the diet and biomedical component to autism,
behavior therapies need to be constantly fine-tuned and re-evaluated on a
regular basis for effectiveness.

8. Look into alternative treatments and therapies, as well as traditional, and
start the ones that make sense for your child. There is much to be said for the
diligent parent who continuously is seeking out answers for their child. What is
seen as controversial today may be standard practice tomorrow. If it makes sense
for your child’s well-being then consider doing that particular therapy. Who
knows? It might be the magic bullet for your child, or at least the beginning of
the road toward recovery.

9. Supplement, supplement, supplement — So much can be written on this subject.
First you will need to supplement nutritionally a child whose brain is starving
(See Dr. McCandless’ book recommendation). The trial and error on what and how
much to give your child cannot be understated. I highly recommend a go slow
approach to any kind of supplementation, followed by a DAN physician lead
regimen. It is too easy to give a child too much or too little and not see the
desired results. Also consider you may need to supplement educational and
behavioral therapy above and beyond what a school district can offer. If budget
allows seek out the additional resources that may benefit your child, and don’t
waste time waiting for school district approval if it makes sense that it would
benefit your child today.

10. Educate all those in contact with your child — I used to meet with teachers,
therapists, family members and give them a rundown on Daniel 101. This fostered
greater communication and allowed for a cohesive method of handling him and
meeting his therapy needs. It provided a consistency between therapists,
educators and home in our universal approach.  It also allowed for greater
credence when the effects of our efforts began to show with improvement from
Daniel.

In summary, you are about to begin an odyssey that will change your life in ways
you never dreamed of (not all of it good). There will be days when you cry in
frustration over the setbacks, and days when you dance for joy on the successes.
Especially in the beginning stages, expect to take one step back for every two
steps forward. This is still progress, however slow.

None of these therapies come with a predictable rate of improvement. Many
believe that you need three months to a year before you can accurately monitor
the success of your efforts. You might feel that real progress has been made
when one day your child passes some important developmental milestone – or
simply when you have the overall feeling that your daily family life now has an
element of normalcy.