HINTS FOR THE NEWLY DIAGNOSED
first thing you should do if your child is diagnosed on the Autism/PDD
spectrum is to tell yourself that it is not your fault, you are living with it
already, it just didn't have a name yet, and that things will get better.
I am just repeating what other parents of Autistic/PDD children told me when
Andrew was diagnosed. I am still having to tell myself that it is not my fault
because I do feel guilt that it was something I did wrong during my pregnancy,
delivery, in caring for him, or my bad genes.
I do know that it has gotten so much better. He does not tantrum near as much
or hit anymore. He can also communicate so much better and he points to
things. Below I will give you some ideas of where to start and what worked for
Good Luck and don't forget that there are a lot of us out here pulling for
you and your family.
these with caution. The quality of assistance you may receive will differ by
city and state and sometimes you may get assistance that you don't want. Use as
many as you can but my suggestion is to first talk to other parents about their
experience and success with different programs.
Let me know of other suggestions you have.
I DID AND WHAT I HAVE SUGGESTED OTHERS DO
If your child is under 3 years old, look for your local ECI (Early Childhood
Intervention) type program.
2. If your child is over 3 years old, call your school district,
give your situation and see how they can help (you usually have to go through an
evaluation through the school district). Read up on
special education law and monitor your school district during this process to
make sure they are treating you fairly. I would recommend bringing people with
you during the ARD's and any meetings and evaluations. Good people to take are
those that are knowledgeable and have your child's best interest in mind. Look
for an advocacy group, the ARC, your personal therapists and consultants.
3. Check for the nearest Autism Society Organization and attend a meeting. At
that first meeting, introduce yourself (they will probably ask you to stand up
and introduce yourself) and say how you need help e.g.."My name is Michelle
and my 3 year old son Joe was diagnosed as PDD 1 month ago and I need help
finding therapists and financial aid. I am also having trouble with my school
district and am not sure what to do". The people there are generally
helpful and nice as they have been in similar shoes at one time.
4. Check for support groups in your area for related disorders.
5. Try and find other parents in similar circumstances. They are a great
resource and a good support tool.
6. Check with your insurance company to see what they can offer. My insurance
company offered speech and occupational therapy but our son didn't like who was
in our plan at that time, so we paid out of our pocket for in-home behavior
modification. We have since found a good speech pathologist and occupational
7. If you have family members, friends, neighbors, church members, or others
that you are close to, encourage those relationships with your child. They can
be trained on how best to work with your child and may be able to work
one-on-one with them or give you respite time.
8. Research Autism Web
Pages. My favorite search engines are www.monstercrawler.com
and www.ask.com. There you can type in
any of your concerns or questions about autism. You should also check out my links
page which has a lot of links. This was very helpful when Andrew was first
9. Join an e-mail
group for informational purposes. Many of their discussions will pertain to you
and your family and some might just go over your head. When they start talking
about medical test results and genes I get lost, but I am learning a lot about
treatments. Go to http://groups.yahoo.com/
to search for a group you like or create you own group. The groups I subscribe
to are: Recovered Kids
, Texas Autism
Advocacy , Interven , Verbal
Behavior , Autism
Awareness Action , CAN
Alert , Autism List ,
Autism-Mercury , Allergy-Related
Vaccine Induced Autism. I get these sent in digest form. That way I can go
to my e-mail, right click on the digest for that day, choose "open in new
window" on all of them, then disconnect from my Internet host (so I don't
use hours or hold up my phone line) and then I read them off-line. Yahoo also
has clubs that are pretty much like the groups.
10. Try to be creative in what you do. If you need to make therapy tools, try to
make it yourself using magazine pictures, recycled products, and used toys to
save money (check with other parents that have children that are older or more
advanced and they may no longer need the tools or toys that you can use).
11. Find a good doctor, preferably someone with knowledge of the DAN
(Defeat Autism Now) protocol. Have them run tests on your child to check for
things you would feel comfortable with such as: fragileX, amino acids, metals,
intestinal permeability, candida, yeast, mercury toxicity, food allergies, and
such. A lot of our kids have medical/biological problems that need to be
addressed. I would also suggest that you order
the DAN protocol for yourself ($25.00's).
12. Pull out the phone
book and look in the yellow pages under "Autism." Call any place that
you think might be able to give you advice, information, or help. Be bold and
ask how much their services are, how old are the people they serve, and do they
have referrals or could you talk to a client about them.
(I called a nonprofit help group called "Any Baby Can,
Inc." to help me understand my options for financial aid, therapy, and
special needs programs We did not qualify for financial aid, but did qualify for
respite services and a little money from in-home family and support services for
therapy and supplies[up to $3,600.00 a year]).
DO I DO FIRST?
Here are some recommendations from books, articles, web sites, and other
Use all with caution and consult your doctor before trying anything new. These
ideas were what I based my search on but I did vary a little from the
Get a second opinion-preferably from a treatment or research center.
2. Call anyone you think that can help (use this web site, phone book, etc..)
3. Read good books and get informed.
4. Remove all dairy products from their diet and if possible start the
gluten/casein free diet-see diet.
5. Start an ABA (Applied Behavior Analysis) program by finding a consultant and
If this therapy is not for you or your child, look at alternatives like
Floortime (we use many of these techniques in our ABA program) and Son-Rise.
Find a Speech Language Pathologist and Occupational Therapist that has knowledge
and experience with autistic/pdd children like your own
6. Join a support group, the local autism
society chapter, or call other parents that you can connect with.
7. Order the urine organic acids test from the Great
Plains Laboratory-(913)-341-8949 or have your doctor find a test that your
insurance will pay for. These type tests will tell you whether your child has an
abnormal amount of yeast in his gastrointestinal system (can be treated with
antifungal medications or probiotics and a low-sugar and yeast diet).
8. Have an allergy test run to determine any other allergens-then remove
anything that your child may be allergic or sensitive to. Note: although your
child's test may say that they are NOT allergic to something, the test may have
missed an something. An elimination diet is helpful in determining food
9. Consider adding supplements such as B6 and magnesium and DMG, both of which
can be found at Kirkman Labs (SuperNuThera, TMG, EnZymAid, etc.) http://www.kirkmanlabs.com.
Although these did not work well for my son at this time, many other parents
have had success with them.
this point I would recommend reading positive books about autism and looking at
Resources and Autism
Links pages. Feel free to e-mail me
Read about treatments and what is new in autism.
Education at About.com!
If you need to know anything about Special Ed, Pat Linkhorn, the
Spec Ed Guide at About.com, has it here.
and Asperger's Syndrome
Classroom strategies for the Autistic and Asperger's student in the
mainstream school environment.
and Asperger's: The State of Play
A good review of various issues involved with education for the
Autistic and Asperger's student.
the Individual Education Plan
This IEP informational packet is valuable for all parents dealing with
special education issues.
The mission of TEACCH is to enable Autistics to function as
meaningfully as possible within the community.
The Individuals with Disabilities Education Act is a federal law which
guarantees a free and appropriate public education for every child
with a disability.
A Portland, Oregon based organization that provides training
seminars for parents, professionals and school districts around the
Individuals with Disabilities Education Act
A summary of the Individuals with Disabilities Education Act and it's
& SSI Disability
A diagnosis of Autism or PDD used to mean automatic qualification
for SSI but now things aren't that simple. Read about what you
need to know to help your child's case be allowed.
Screening Guidelines Published
The American Academy of Pediatrics recently endorsed new
guidelines for early screening of children at risk for Autism. Their
endorsement along with those of other organizations is a big step
toward developing an early intervention plan that will be effective
in working with this disease.
Case for Neurobiological Workup in Autism
The author suggests a more rigorous diagnostic procedure would
better identify the nature of Autism.
Puberty and the Possibility of Seizures
In about 25% of Autistic children, puberty brings on seizures. This
paper discusses the diagnostic issues and implications.
Disorders in the DSM-IV
Provides the basic diagnostic criteria needed to make a valid
diagnosis of Autism and other PDD conditions.
This site provides a listing of many of the commonly seen
behavioral diagnostic criteria.
DSM-IV Diagnostic Criteria for Asperger's Disorder
This site provides the diagnostic criteria needed to diagnose
Asperger's Syndrome. It also provides Gillberg's Criteria for
a Diagnosis of Asperger's or PDD in Canada
This page lists out the requirements for a medical diagnosis of
either Asperger's or PDD in Canada.
Definition of Autism
Dr. Goldberg offers a new look at Autism.
Tools List for Doctors
Early Intervention is the key with Autism and PDD. This is a
screening list for physicians and parents.
MADORE FAMILY'S AUTISM RESOURCE SITE:
OUR STORY RESOURCES
HELP HOME PROGRAM
JUST DIAGNOSED TREATMENTS