Christina Adams, M.F.A.

Autism, Early Intervention and Recovery:

Guidelines for Help and Hope
Christina Adams, M.F.A., is the author of A Real Boy: A True Story of
Autism, Early Intervention and Recovery (Penguin 2005).
Her work has appeared on National Public Radio’s Day to
Day and in Los Angeles Times Magazine, The Los Angeles
Times, and Brain Child Magazine. A Real Boy has been
featured in The Washington Post, CHILD Magazine, Booklist,
Publishers Weekly, The Tampa Tribune, and others. It was
nominated for awards from the Autism Society of America, Books
for a Better Life, The Ron Ridenhour Foundation, and the Library
of Virginia. Born in Washington, D.C., Christina served as editor
of The Pentagram (the newspaper of the Pentagon), and
worked in communications and public relations for the federal
government and aerospace and insurance industries. Christina
speaks nationally and conducts workshops about autism and
writing. Medical publications she has edited include “The
Cornerstone Method: IQ Rise Found in Treated PDD children”
with psychiatrist Dr. Gilbert Kliman. Her website is
www.christinaadamswriter.com

Introduction: My son was a normal baby whose first word came at nine
months. He was friendly, sociable, attached and quite advanced in
many ways. But there were early warnings signs that he was
susceptible to dietary, immune, allergy and motor problems. Although
he was pronounced “advanced” at the age of fifteen months by his
pediatrician, after his fourth DPT shot, he regressed and lost language,
social skills and attention. He became hyperactive and aggressive.
Later, his language returned as echolalia. He was kicked out of two
preschools within weeks. Diagnosed at nearly 3, he began dietary,
speech, ABA and language-building therapies immediately. His
program was:

35-40 hours per week of in-home Applied Behavioral Analysis.

3 hours per week of in-home one-to-one speech therapy.
2 hours per week of clinic-based OT (occupational therapy).
Approximately 1 hour per day of Cornerstone therapy (varied from day
to day).
Around-the-clock language-building, immersion and stimulation (by
myself and others).
Parent-Prompted Participatory story-telling (method I developed).
Gluten-free/casein-free/low sugar diet.
Natural supplements.
Anti-viral medications.
Anti-fungal medications.
Anti-anxiety medications.
ABA therapist/aide to assist him in typical preschool when ready.
Field trips and social skill outings with parents and ABA therapists.

After 18 months, my son passed a ½ -hour kindergarten readiness test

undetected. By nearly age five, was thought misdiagnosed by a doctor.
By age seven, his speech tested at very high age levels, superior in
many areas. He is considered a gifted child by his school in second
grade. Reading, math, abstract concepts and other academics are at
advanced levels. His handwriting is very good. Auditory processing
greatly improved. Does homework independently. Must still be on
medications and diet. Cannot tolerate dairy; can handle up to 3-4
grams of sugar in select food servings after being able to consume
only 1-3 grams per serving a year ago. Shops for his own foods, reads
labels and manages his own food consumption when in restaurants
and with friends. Has mild attention issues at times, while in other
activities, he is highly skilled and very independent. He is very
sociable, emotionally attuned, sensitive and caring. He is adventurous
and charming, and usually makes friends wherever he goes.

1. Early signs of autism spectrum disorders: identifying them

can help your child improve

-Many children do not fit an “autism stereotype” as far as

stimming, being nonverbal and nonsocial, etc. The main aspects
of being on the spectrum are “differences;” by this I mean there are
different or unusual qualities to a child’s (or adult’s) communication
and socialization abilities.
They may also be overly focused or have or unusual interests. Thomas
the Tank Engine, bathrooms, certain toys, household or mechanical
objects, repetitive and limited play, lack of social smile and attention
(even though many kids do have a social smile and reasonable
attention in certain situations).

-Subtle health problems are often present from birth or later.

Eczema, thrush, picky eating, reflux, gastrointestinal problems ranging
from loose bowels to constipation, rashes, early food allergies, limited
eating and eating problems, failure to thrive, ear infections.
These can be treated biomedically with diet, medications, supplements
and feeding programs when carried out under the care of a doctor
specializing in autism.
-Take a look at the subtle differences about any baby or
toddler and write them down. Note developmental milestones
and any slight variances in development, either positive or
negative.
For example: The “tilt test.” A baby can be held upright at the waist,
away from the parents’ bodies, then the parents can slowly tilt the
baby by 45 degrees to the right and left. By eight months of age, most
babies will try to keep their heads directly upright. However, a child
with AS usually keeps his or her head aligned with the body, so that it
tilts from side to side during the test. This can indicate a movement
disorder that shows risk for autism.
Late walking (even just a couple of months), odd crawling, late speech
or gestures, being a “too good” or too fretful baby, are often signs of
problems;
Reflexes (such a startle reflex that stays with the child past the normal
developmental period) that do not leave or never appear, as well as
“posturing” (abnormal-looking positioning of the hands or lower body
when walking, etc.) can be signs of developmental problems.
“W” sitting (knees turned in and flat on the floor with arch downward
and feet flat behind) is often a sign of motor and trunk weakness.
The organization First Signs lists more noticeable things to watch for.
But various subtle biomedical and neurological signs like the ones I list
are just emerging in the scientific literature and most professionals are
not aware of them. This type of information can often be found on the
Shafer Autism Report as it emerges.

-Closely examining the early features of your child can lead to

the most effective therapeutic, medical or dietary paths.
Remember these early deficits are quite entrenched and
should be targeted immediately.

Almost all kids have neurological weaknesses that could benefit from
OT, PT or vision help. Plus ABA can work on this. Speech for all, even
highly verbal kids, is imperative because speech teaches social skills
no matter what level. Even if language is great or superior, often
prosody, pragmatics, turn-taking, idioms and overall politeness may
need work.

Early pre-natal and post-birth health problems can help some parents
figure out if the child’s deficits are hereditary, genetic, neurological,
birth trauma, immune system, nutrition or allergy-based. The
University of Nebraska has an excellent 4-tier workup plan that can
determine cause of autism in up to 40 or more percent of cases. Dr.
Michael Goldberg in Tarzana, CA, can rule out which children show
immune-system weaknesses with testing.
Various geneticists can examine genetic issues, especially if you plan
to have other children. This kind of targeted info enables you to find
the right treatments without wasting as much time and money.

2. The experience of diagnosis—how to move forward with

what you learn about your child.

-There is enormous pain in finding out your child is on the

autism spectrum. This pain is going to have an effect on you
and your family. It is nothing to be ashamed of, it’s just
natural. It is best to understand this going into an autism diagnosis,
so that the pain can be expected and managed, rather than allowing it
to move along at will and possibly wrecking your life in the process. It
is amazing what good effects can come out of such a traumatic event if
effort is put into the situation by both parents, not just the mother.
- Find a very competent, experienced therapist or psychologist who
treats both kids and adults with ASD. He or she can help a family see
the effects of ASD on the family and marriage. This sort of mutual
understanding can make everything go better and possibly prevent a
family disaster or breakup in the years to come.
-Reach out to other parents.
-Attend support groups. If it’s possible that either or both parents are
on the autism spectrum, read books about marriage and relationships
(Asperger’s in Love, Asperger’s Syndrome and Long-Term
Relationships), attend support groups and seek out a marital counselor
familiar with Asperger’s adults.

3. Reaching out--finding the right services for your child (from

parental, legal, and community sources)

- The best information comes from experienced families.

Find families and support groups who know your local school,
Regional Center, doctors, therapists, special education attorneys,
etc. People who are not parents often have financial, personal or
other interests at stake and may not be able to provide impartial
or empathetic information. For instance, families of “typical” kids
sometimes become very resentful when they find out how much
an ABA program costs the local school district. Some medical or
school authorities have a vested interest in telling you which
programs or therapies to use and are not honest about your
child’s true needs for ABA or other services.
- There are many benefits to making your child a Regional Center
client right away, including early therapies. But it also ensures
their long-term eligibility in the face of tightening budgets. In
case you are going to need their services in the long-term future,
it’s best to get signed up.
 - Should you get a special ed attorney and if so, why and when? It
does seem that most people will need one eventually if they
disagree with their school. Schools are more inflexible these days
and if a child needs ABA and other services, many parents who
want that program will have to hire counsel.
- Positives to bringing on an attorney or advocate: If you bring one
early in the process, the relationship between parent and school
can stay more cordial because the attorney offers a conduit for
negative communication, which takes the burden off the parent.
Also, legally, your first IEP tends to be the most important.
- An attorney knows about resources and programs that you may
not. They can also refer you to an outside psychologist for a
complete evaluation of the child, as well as other service
providers, and get those services approved and paid for. Often
you can get far more services by hiring an attorney up-front one
time than you can get in a lifetime of battling on your own.
- If affordable, go at least two conference in the first three years.
Some good ones are local or in LA, others are Autism One
(www.autismone.org) in Chicago, maybe an ASA National or local
regional conferences. Also, in California, go to TACA meetings as
they report from Autism One, DAN! Conferences and other
gatherings (www.tacanow.com). They also feature free speakers
on a monthly basis. Just learn what’s available in your area. Start
your own meet-up group, no matter how casual, if nothing else is
available.
- TACA will assign you an autism intervention mentor, as will
Autism One. Most mentors live in Southern California.

4. Creating a total language and learning environment

(including ABA, speech, “giving language” and parent-
prompted participatory story-telling).

-ABA creates speech, social skills, empathy and shapes desired

behavior. Teaches life skills. Most kids do better with it, a very few
outwardly do not. Some do extremely well and recover normal
functioning. New debate about 25 “eclectic” intervention hours vs.
ABA…new study showed once again that eclectic groups of kids did not
improve and full-time ABA kids did.
-Speech: 3 hours per week is great. For autism and apraxia, the “gold
standard” is 5, but that’s tough to get and run. Prompt and elicit
speech (if child is verbal) during the daily environment. Substitute
alternative means of communication if child is nonverbal, such as PECS
or augmentative communication device, as these are believed to help
the brain develop language and thought capacities.
-Give language whenever possible and have them repeat it back.
-Flood them in good language and good-quality visuals, like art, well-
done kids’ books, pictures, etc. Carefully manage the time spent on
videos or computer video games, and use them as positive reinforcers
(and for when you absolutely need a break.)
-Tell bed-time stories at night in the dark, as the visual distractions are
low and you can get very good attention and often language from
them.

5. Diet—your first-line intervention. Can be worth $100K in ABA if

it works.
Almost all kids (and many adults) have dietary issues. Dairy products
including casein and related items are the most common. Wheat and
gluten are also common irritants that can exacerbate autistic behavior.
Other irritants are soy, corn, sugar, dyes, colors, artificial sweeteners,
nitrates, yeast, corn syrup, chocolate, fruits, etc.

Things to do: increase protein intake (serve it first on the plate, before
carbohydrates are served). Cut back on carbs. Avoid whole grains,
sugars and cut back on juice. Eliminate dairy first, then try other items
such as gluten, etc. Investigate other diets as well. Find an autism
parent to take you shopping for the first few times.
Conduct skin allergy testing with an allergist who is familiar with
autism. Find an autism doctor. Purchase organic products and avoid
tap water. Use a multi-vitamin and possibly a calcium powder
supplement if the autism doctor advises them.

6. Medical interventions—how testing, supplements and

medication can help.
-Immune system findings, genetics and other findings are emerging
daily.
Genetic: several genes, not just one, may be at play in setting up
autism spectrum disorders. This does not explain the rise in autism;
many researchers conjecture that there cannot be a solely genetic
epidemic unless environmental triggers are altering genes very quickly
in young individuals.

Environmental: Some researchers theorize that genetically vulnerable

individuals, with family histories of food sensitivities and other allergic
responses, often occurring in families with notable drive, focus or
intelligence (notwithstanding their socioeconomic status), predispose
the individual toward developing autism if negative environmental
triggers occur. According to the Children’s Environmental Health
Center at UC-Davis, the current estimate is that 5-15 specific genes in
a child place him or her at risk for autism. There are hot spots on every
chromosome and it is a very complicated disorder. There is very little
attention to scientifically sound strategies on how genetic issues
impact environmental exposure risk.

There are many potentially toxic substances that have been

increasingly found to cause early dysfunction in the immune system,
developing brain, sexual development, and learning and socialization.
Subjects of scientific inquiry include industrial chemicals (perchlorate,
phthalates, arsenic, mercury and other heavy metals), pesticides,
indoor and outdoor pollution, and off-gassing from household products.
Additionally, ingredients found in vaccines such as thimerosal (a
mercury-based preservative) and other vaccine contents, as well as
the type, number and early frequency of vaccines in the recommended
childhood vaccine schedule, are also being examined. Antibiotic usage
is also being analyzed. It’s also postulated that certain environmental
factors may be affecting boys more significantly than girls, as they
constitute the majority of autism diagnoses.

More scientists are becoming interested in autism. Not just toxicology

but other fields. A notable neurobiologist who is working on auditory
cortex had not thought about environmental exposure, but another
researcher told him that some chemical compounds called PCBs can
affect the auditory cortex. This could explain why the hearing of a child
can be fine but auditory processing is scrambled. They collaborated
and wrote a paper on it.

What compounds are being examined?

PCB (polychlorinated biphenyls) is the name of a chemical family of
209 chemical compounds which are toxic and accumulate in animal
tissues. They do not disappear from the environment although they’ve
been banned since 1979.
This is a high-priority study. Flame retardants –there is direct evidence
they are accumulating in moms and children. A family in Oakland
tested at a reliable lab for (brominated diphenyl ether) BDE-47 levels
had results like this: dad was lowest in toxicity, then mom was higher,
then 10-year-old next highest, then toddler had three times the
amount of the oldest sib. There are about 209 of these compounds and
it seems they are concentrating in the most vulnerable children.
Perchlorate (rocket fuel component) is in most water, lettuce and
breast milk in California.
These chemical stressors are driving a new area of science: how DNA is
modified through methalation reactions—epigenetics modifiers. These
can be transmitted from parent to child.

Vaccines are made in egg and ova mixes which can affect people
sensitive to these substances. Not to mention thimerosal, aluminum,
etc. Add this issue to a growing list of environmental exposures. There
is a real risk: some scientists conjecture that five vaccinations for a
child may be fine but 30 are too many.

Risk factors for families: doctors need to take careful and detailed
family histories.
Timothy syndrome—single mutation in a calcium channel gene. In this
group, the incidence of kids with this mutation was high--70% of this
small study group had autism. Study came out of Boston.

Kids with autism have a risk of sudden death. Some scientists wonder
if it is linked to cardio factors and immune system responses?

We are a critical junction. A scientist at the Children’s Health Center at

UC- Davis says autism rates are not totally going down yet; that they
normally fluctuate and that it’s too soon to tell yet if they are truly
declining.

There is exposure to organic mercury from various sources.

There are many issues with phthalate esters exposure-from plastics—

beginning in the ICU when babies are born. Triclosan may be bad—it is
an anti-bacterial and anti-fungal. Analogous to the flame retardates
except chlorinated and hydroxylated.

From a scientist: Example of a substance thought initially to be safe

but now considered questionable: An insecticide called Fipronil used
for flea control was thought to be safer than the old ones but it may
still be dangerous. This compound affects mammalian receptors. Beta-
three subunits form receptors, and autistic kids do not make enough of
them. These receptors function just like the insect receptors affected
by Fipronil. So this may harm kids’ existing receptors.

Even in single-gene disorders, no one yet knows why some people with
certain disorders have just one bad day per month while others have a
bad year? Nothing known yet accounts for the phenotypic variability.
This is why environment comes into play.
Too long we have been focusing on cause and effect of genes only.
Environment has a great impact on people, not just in autism but other
emerging medical issues such as possibly Parkinson’s, Alzheimer’s,
ALS, MS, pediatric cancers, allergies, etc.

7. What’s out there and possible?

Chelation: studies I’ve seen so far do not support, but anecdotals are
emerging, some good, some not. HBOT? IV glutathione? Supplements?
Targeted immune-system products like IVIG and IMIG? What’s next?
Always keep hope. Progress, even with nonverbal kids, can be
astounding. R’s story of hope.

For more information on A Real Boy: A True Story of Autism, Early

Intervention and Recovery, or to schedule a speaking date or
presentation with Christina, please visit
www.christinaadamswriter.com.