Time's cover story
in the May 6 issue,
"The Secrets of Autism,
looks at the exploding
number of diagnoses
and other facets
of the condition
on the lack of
autism and vaccines
The M.I.N.D. Institute
information on current
research and treatment of
A WebMD article
on the genetics
Wired Magazine's article
on the frequency of autism
and Asperger's syndrome
in Silicon Valley, titled
"The Geek Syndrome"
Society of America
has local chapters
which offer support
President calls on
Congress to support
mental health parity,
Washington Post article.
Institute for the
Study of the
takes a tongue-in-cheek
look at the differences
between autistic and
A list of books about
the experience of autism
by Temple Grandin and
Rep. Dan Burton, R-Ind
calls for funding
Autistic Spectrum Disorders
By Linda Lamb
An Interview with
Author-Advocate Mitzi Waltz
This interview with Mitzi Waltz, author of Autistic Spectrum
Disorders, looks at questions most often in the news.
After working in the US as an advocate for people with brain disorders for
a number of years, Waltz has decided to pursue a doctorate in
order to teach and conduct academic research. She is currently
with the Autism Research Unit at the University of Sunderland in
England. The ARU is well-known internationally for its work on
the relationship between autism and metabolic disorders. Waltz's
doctoral research is focused on the medical history of autism,
and she has presented to audiences in the UK and Europe on this
topic and others related to autism.
- There has been a lot of media coverage about the rise in
rates of autism in children. Some have said that the rise in
autism rates is really only the result of better screening or
more refined diagnostic criteria. Is that true?
- In short, no.
The diagnostic criteria used in the US to diagnose autism are actually
tighter now than they were ten years ago, and yet the number of
children with autism continues to rise. And that's not taking into
account the even larger rise in the number of children with related
conditions, such as pervasive developmental disorder, not otherwise
specified (PDD-NOS), or Asperger's syndrome.
Doctors are doing a better job of diagnosing, and they deserve credit
for that. But diagnosis is still delayed by three to six years from the
first symptoms, in most cases, so there's still more improvement needed.
However, severely autistic children did not escape medical notice in
the past, just as they do not now. Some were mistakenly diagnosed as
simply "mentally retarded," but as the rate of mental retardation has
not fallen during the period that the autism rate has risen, better
diagnosis doesn't seem to tell the whole story.
If you talk to doctors who began working in this field 20 or 30 years
ago, they will tell you that there's been a large and noticeable increase.
So will teachers and social workers. The figures from state education
departments all show an increase, as do treatment figures.
- Is there currently research looking into the claims of some
parents that autism is the result of childhood immunizations?
- Unfortunately, the level of research is still cursory at best.
There's no question in my mind that vaccination for deadly
childhood illnesses has saved many lives, but some experts
question whether we have traded these acute, deadly diseases for
chronic and often severe conditions.
It's apparent from
immunological research that children with autism have an off-kilter
immune response system, and a high propensity toward autoimmune
conditions. This means that children who have inherited genes linked to
autism may be especially vulnerable to unusual vaccine reactions,
particularly when multiple live vaccines are used. Past research
indicates that they also have unusual patterns of response to
measles and mumps when these conditions are caught in the usual way,
especially when more than one viral illness is caught in rapid
succession. Researchers need to follow up on these clues: while
vaccines are important for public health, exceptions or changes
to the vaccines and/or the vaccine schedule may be necessary to
protect some vulnerable children. This is already done for children
with HIV/AIDS and for children with infantile epilepsy.
It's important for parents to understand that MMR and other vaccines
probably do not cause autism--not in the way that exposure to the
measles virus causes measles, for example. But for a vulnerable child,
it's possible that certain forms of vaccination, as well as certain
types of infection, could be the trigger that starts a cascade of
symptoms. I have spoken with too many parents whose children
deteriorated markedly and obviously in connection with vaccination to
discount the possibility. That said, I have also spoken with
parents whose child lost skills and became autistic following infection.
In my medical history research, infectious disease appears to have
played an important role in autisic symptoms, even before autism had
been fully described or named.
- We assume medical experts are continuing to recommend
immunizations. Are there any cautions for parents?
- It depends on which experts you speak with, to be honest. Public
health experts must be concerned with the overall picture, not
individual children, so they tend to stress continued vaccination
using the currently recommended doses and vaccination schedules
for all children. There are many doctors who do not agree,
however--indeed, a recent survey of British doctors and nurses found
that many were privately worried about giving the combined MMR
vaccine to their own children.
Doctors who specialize in treating children with autism are faced
with this issue daily, usually when parents try to decide whether or
not to vaccinate subsequent children. Some have recommended that for
vulnerable children--those with autism or epilepsy in immediate family
members, for example--vaccination might be beneficially delayed, and
vaccines might be given separately and with long intervals between
shots. Certainly, parents and doctors should use common sense: children
should not be vaccinated when they are already ill, and vaccines
containing the known neurotoxin thimerosol (mercury) should be
For parents faced with this dilemma, whether and how to vaccinate is
an issue to explore with a specialist.
- Is there evidence of other environmental factors being linked
to the increase of autism?
- Yes. Our research group at the University of Sunderland is
particularly concerned about organophosphate pesticides. As with
viral infections, some people are particularly sensitive to
organophosphate (OP) compounds,
while others exposed to the same amounts suffer no ill effects. These
chemicals have become common in the environment. Even compounds that have
been outlawed remain in the environment, and may be used illegally or
be present in foods grown in countries where they are not regulated.
The ARU's director, Paul Shattock, has spoken with several families
whose children developed autistic symptoms that appear to have been
connected with organophosphate exposure (these compounds can also
cause neurological damage to adults).
The M.I.N.D. Institute at the University of California, Davis,
http://mindinstitute.ucdmc.ucdavis.edu/) plans to investigate
this organophosphate angle.
Mercury, and possibly other heavy metals, be also be an issue for at
least some children with autism. Again, they may have a genetic
susceptibility. Researchers in Italy found that most people with
autism in their genetic study had an altered form of the gene that
creates the neurodevelopmental protein reelin. One of the things that
reelin normally does is assist in the metabolism of heavy metals.
Someone with abnormal reelin production would likely have problems
processing and eliminating dangerous neurotoxins like mercury and lead.
Metabolic problems have been an issue throughout the history of autism.
Even the earliest case studies written note a high rate of bowel
disturbance, unusual eating and drinking patterns, and sometimes signs of
vitamin deficiency. Quite a few children with autism appear to benefit
from a gluten-free and/or casein-free diet. The ARU's research has been
focused on this issue for over a decade, looking at abnormal peptide
activity in the gut.
- Why do some geographical areas, such as Silicon Valley in
California, have such high rates of autism in children?
- A number of factors have been suggested. There could be
environmental factors at work--something affecting people in discrete
areas, such as high background levels of mercury, or exposure to
In Silicon Valley, it's been suggested that quite a few
people with Asperger's syndrome or autistic traits were drawn to the
area by the lure of high-tech jobs, met partners with the same sort
of traits, and passed on a "double dose" of the genes--the result
being more autistic children, with more severe forms of the condition.
It's an interesting theory, and bears looking at.
Valley's rates are similar to those of Brick Township, New Jersey, which
is a working-class industrial area rather than a high-tech mecca. The
island of Jersey in the UK is also reporting extremely high rates, and
it has very little in-migration and almost no industry.
- Has a genetic predisposition to autism been proved?
- Yes, as much as such a thing can be "proved." Twin studies have
shown that if one twin is autistic, the other is also likely to be
autistic, or to have autistic traits. Non-twin siblings and other close
relatives of people with autism are also more likely to be autistic.
However, it's not as straightforward as early researchers had hoped--there's
no "autism gene," although the genes responsible for causing several
conditions that include autistic traits have been identified (Rett syndrome,
Prader-Willi syndrome, and Angelman syndrome, to name just three.) The
genetics of autism appear to be very complex. Several genes have been
identified, but it looks like it takes a combination of genes, and that
more than one combination can have similar effects.
It also appears that it's not purely genetic. Your genes may give you
a high susceptibility to autism, but they may not be expressed until
certain environmental factors kick in.
- Are there currently tests that can show whether the
genetic predisposition exists?
- The only commercially available tests are for conditions like Rett
syndrome, where a single gene or a small number of genes have been
identified. Many doctors do test for Fragile X syndrome, a chromosomal
difference that is a common cause of mental retardation and is also
associated with autistic symptoms.
There's no genetic testing available for
autism itself, although there is a lot of genetic research going on.
Three generations of my own family have given blood samples for
chromosome screening to a research group, and we hope others will do
this as well.
Genetic research will not lead to a cure, but if
we can identify the genes involved and learn what they do, we may be
able to understand what environmental factors are involved and make a
difference that way. My earlier references to the reelin gene and
heavy metal metabolism is a good example of what I mean--if you knew
your child had a gene that kept him from metabolising heavy metals,
you could do some things to be especially protective of him or her.
- Are there other ways to "measure" autism, like physical differences in
- In a research setting, doctors might use tools like CAT scans. They
aren't used in regular diagnosis too often, although this may change in time.
Researchers would love to find some kind of physical marker, something that
would turn up on a blood test, for example. The M.I.N.D. Institute has
identified some possible blood markers, and this kind of research is
- How is autism currently diagnosed?
- It's diagnosed through observation and conversation. There are several
test instruments that doctors use with young children, including basic
tests of neurological function and questions or tasks that are specific
to the impairments seen in autism. Doctors also interview parents. If
diagnosis is being done by a school district, the teacher will be involved,
too. In a best-case scenario, professionals from several different
disciplines will work together.
- With physical differences now able to measured--by sophisticated
brain imagery and blood assays--does it make sense to still label
autism as a "mental health" issue?
- Yes and no. It's a developmental disability, really, and should be
thought of and treated as such. It's important to note that people with
autism do experience a high rate of mental health problems, though,
such as severe anxiety and depression. Sometimes if a person is only
viewed as having developmental problems, any mental health issues
that are present don't get adequate attention.
- Does a "mental health" label work against people seeking treatment
or getting support?
- It can, although it shouldn't. In the US, developmental disability
programs sometimes use IQ to determine whether a person is eligible for
services. For example, unless a child has an IQ under 70, he is not
eligible. But if the family then goes to the mental health system for
help, the professionals there may not understand how to work with someone
whose basic problems lie in developmental delay or unusual patterns of
development. What's needed is treatment that's geared to the person, not
- How is autism treated?
- In the US, the most common "treatment" is special education, followed
by medication. I should note that as of yet, no medication has FDA approval
as a treatment for autism, although evidence suggests that some are helpful
for those secondary mental health issues.
Intervention needs to be early and intensive for the best result. There are a
lot of programs available, with applied behavior analysis ("Lovaas") being
the one that's been researched the best. It's great for many kids, especially
those with the most severe forms of autism. Other children may benefit
from a different sort of intervention. Speech therapy, occupational
therapy, and physical therapy can be very useful. A type of occupational
therapy called sensory integration targets the sensory differences of people
Medical treatment is still in its infancy. Many families try diet, vitamin
supplements, and other complementary therapies. These can be very helpful
for some (not all).
- What is the impact on parents, of a child having an autistic
- Having an autistic child will change everything about your life,
from whether you get enough sleep at night to how likely you are to get
It's hugely stressful, and that's not helped by the lack of help
from medical professionals, schools, and social services agencies. Indeed,
the situation for many families is horrendous, especially in areas where
there are no services or where services have been completely swamped by
the rising number of cases.
Divorce rates are very high in affected families, and siblings of children
with autism are also affected in ways that aren't always obvious.
It's essential to get help and support from others right away, or it can
just be overwhelming.
- Politicians increasingly call for "full parity" for mental health
conditions. Are these treatments covered by insurance?
- Only in those states that have specifically mandated coverage
for autism, such as California. And there's still much argument as to
what "coverage" means, because the treatments that have been well-researched
(such as ABA) aren't seen as healthcare, per se. There's not a set protocol
for evidence-based treatment, although that is taking shape in some places.
- Are there any national support organizations for parents?
- The best place to start is still the Autism Society of America
www.autism-society.org), which has lots of local and regional
There may also be a local support group near you that's not part of the
ASA. Make a few calls, and see what you think about the people involved.
There are some groups that are great for parents of young, newly diagnosed
children, others that caters to families with teens or adults. Getting
online is a good way to meet other families, too.
- What does the description of autism as a "spectrum disorder" mean?
- It means there's a range of expression, from very severe to relatively
- What would be the range of functioning, with someone who has an
autistic spectrum disorder?
- At the low-functioning end, a person might be completely non-verbal,
unconnected to all other people, self-injurious or aggressive.
probably many people who have Asperger's syndrome, a very high-functioning
form of autism, who don't even know they have it. These people might be
described as eccentric, odd, or fixated, but you wouldn't think of
them as having a "developmental disorder" because they look "normal" in
most respects. An adult with Asperger's syndrome might seek help for
anxiety, depression, or obsessive-compulsive behaviors but cope
fairly well with his or her autistic traits. I met many people
who fit this description in my previous life as journalist
covering high-tech topics--lots of programmers and even a few
famous computer moguls.
I do know that many people with Asperger's syndrome
suffer a great deal, even though they
may seem to be coping. They've often had brusing childhoods, with a lot of
teasing and ostracism. This takes a terrible toll. We need to pay closer
attention to identifying milder forms of autism in kids and helping them
learn good coping skills--and protecting them from bullies, too.
- Are there any "good sides" of autism?
- You bet! The ability to see the world through a different lens, to
think in unique ways, and to make others question their assumptions.
One of the things I really enjoy about the adults with autistic spectrum
disorders that I know is their honesty. It can be brutal, but it can
also be funny and refreshing.
For high-functioning individuals, and for those
low-functioning folks who have "savant skills," there's a great deal of
talent amount people with autism. They often have an ability to focus very
intently on a single topic. Channeled well, this can lead to being very
good at math, music, art, crafts, or inventing things. I've met adults with
high-functioning autism who are university professors, engineers, artists,
parents; I've also met others who are stuck in dead-end jobs and very unhappy.
- What is it like to have autism?
- I don't know, even though I have read many "inside accounts." I think
that the most difficult aspect might be the sensory disturbances many
people with autism have, like having an abnormally high pain threshold that
can lead to injury, or being very sensitive to light touch or noise.
Temple Grandin's accounts are really interesting, although it has to be
said that Temple is quite unique, even amount people with autism!
- Are children with autism likely to have any other conditions?
- Yes, autoimmune disorders such as allergies, asthma, eczema
appear to be higher in this group. About 25 percent have epilepsy,
and I suspect the real number is higher, since partial seizures are
often missed. Depression, bipolar disorder, ADHD/ADD, and other
conditions are also more common in people with autism.
One question that hasn't been answered yet is the medical status of adults
with autism. Current research indicates that their life span is shorter
than that of people without autism. We don't know why yet. There seems to
be an increased susceptibility to Parkinson's disease, athough that's not
certain. There's definitely an increased rate of accidental death (some
of these "accidents" may be suicide or institutional abuse, however.)
All people with autism need good, regular health care and dental care.
- Is autism related to ADD/ADHD?
- ADD/ADHD is more common in people with autism than in the general
population, it's also seen more often in their families. Perhaps there's
an overlap in the genetics--it's not known at this time.
- Will there be a cure for autism?
- No, but there may be preventative measures that will limit the number
of children who become autistic, and lessen the severity of their symptoms.
There will definitely be improved treatments. Some treatments are
already giving some children the opportunity to progress well enough to
be indistinguishable from their peers. Personally, I hope that we will
come to value people with autism more, and accomodate ourselves to them
instead of always forcing them to conform to the ways of "normal" people.
- Some politicians and governmental agencies also now regularly
calling for more research dollars. Do you see interest and
- Research funding is definitely increasing--and thank goodness for that!
Sadly, much too much of that funding is going into genetic research and
"rat science." Basic research is absolutely vital, but considering the
number of affected children and adults who are here now and in need to
help, I think we should turn the majority of funding toward finding out
- What is the most exciting research into autism today?
- Of the genetics work, I'm most intrigued by the finding on reelin.
This neurodevelopmental protein is expressed throughout life, not just
before birth. Perhaps a way could be found to turn production back
on if it has been turned off. This is a kind of genetic research that
could benefit people with autism directly.
There are several research groups looking at various environmental factors.
However, most of them are small and underfunded, and some face much
opposition. Dr. Andy Wakefield is a good example--he's a lovely fellow
and a terrific gastroenterologist, but since his research into vaccination
and severe gastrointestinal problems in a subset of children with autism
could be seen as threatening universal vaccination, he lost his job here in
England. Happily, he's now working in the US. I keep a close eye on his
work and that of his colleagues in Japan and Ireland.
I also stay on top of new medication studies. Medication has been a useful
part of my own son's treatment program, and if there's anything new and
promising on the horizon I definitely want to know.
One complementary therapy that looks especially promising is essential
fatty acids. There are studies underway at McLean Hospital (Harvard)
and at the University of Durham in the UK on EFAs, which have already
shown promise for people with bipolar disorders. Diet is also very
effective for may people with autism. It didn't turn out to be the
key for my son, but I think everyone should give it a try for six months.
When it works, the results can be great--decreased physical discomfort
and more "connectedness" are the results I hear most often when talking
One thing I've learned from studying the history of autism is that
advances have almost always come from people with a direct personal
interest. You wouldn't believe how may of the major researchers in this
field have an autistic child or an autistic relative. These individuals
understand the challenge in ways that others don't, and their
passion and perseverance makes a huge difference.