A Parent’s Guide to Autism Spectrum Disorder

The National Institute of Mental Health in the U.S. has put out a short book (27 pages) to inform parents about Autism. A Parent’s Guide to Autism Spectrum Disorder can be read online, downloaded as a pdf or purchased as a hard-copy.

The book is broken down into chapters:

What is autism spectrum disorder (ASD)?

What are the symptoms of ASD?

How is ASD diagnosed?

What are some other conditions that children with ASD may have?

How is ASD treated?

How common is ASD?

What causes ASD?

What efforts are under way to improve the detection and treatment of ASD?

How can I help a child who has ASD?

For More Information on Autism Spectrum Disorder

Here’s an example–the first chapter “What is autism spectrum disorder (ASD)?”:

What is autism spectrum disorder (ASD)?

Autism is a group of developmental brain disorders, collectively called autism spectrum disorder (ASD). The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment, or disability, that children with ASD can have. Some children are mildly impaired by their symptoms, but others are severely disabled.

ASD is diagnosed according to guidelines listed in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition – Text Revision (DSM-IV-TR).1 The manual currently defines five disorders, sometimes called pervasive developmental disorders (PDDs), as ASD:

Autistic disorder (classic autism)
Asperger’s disorder (Asperger syndrome)
Pervasive developmental disorder not otherwise specified (PDD-NOS)
Rett’s disorder (Rett syndrome)
Childhood disintegrative disorder (CDD).

This information packet will focus on autism, Asperger syndrome, and PDD-NOS, with brief descriptions of Rett syndrome and CDD in the section, “Related disorders.” Information can also be found on the Eunice Kennedy Shriver National Institute of Child Health and Human Development website and the Centers for Disease Control and Prevention website.

Since the litmus test for some groups will be how this document handles the question of vaccines, here is the section on ASD and Vaccines:

ASD and vaccines
Health experts recommend that children receive a number of vaccines early in life to protect against dangerous, infectious
diseases, such as measles. Since pediatricians in the United States started giving these vaccines during regular checkups, the number
of children getting sick, becoming disabled, or dying from these diseases has dropped to almost zero.

Children in the United States receive several vaccines during their first 2 years of life, around the same age that ASD symptoms
often appear or become noticeable. A minority of parents suspect that vaccines are somehow related to their child’s
disorder. Some may be concerned about these vaccines due to the unproven theory that ASD may be caused by thimerosal.

Thimerosal is a mercury-based chemical once added to some, but not all, vaccines to help extend their shelf life. However,
except for some flu vaccines, no vaccine routinely given to preschool aged children in the United States has contained
thimerosal since 2001. Despite this change, the rate of children diagnosed with ASD has continued to rise.
Other parents believe their child’s illness might be linked to vaccines designed to protect against more than one disease, such
as the measles-mumps-rubella (MMR) vaccine, which never contained thimerosal.

Many studies have been conducted to try to determine if vaccines are a possible cause of autism. As of 2010, none of the
studies has linked autism and vaccines.49, 50 Following extensive hearings, a special court of Federal judges
ruled against several test cases that tried to prove that vaccines containing thimerosal, either by themselves or combined with
the MMR vaccine, caused autism. More information about these hearings is available on the U.S. Court of Federal Claims’ website
at http://www.uscfc.uscourts.gov/omnibus-autism-proceeding.

The latest information about research on autism and vaccines is available from the Centers for Disease Control and Prevention at
http://cdc.gov/ncbddd/autism/topics.html. This website provides information from the Federal Government and independent organizations.

I haven’t gone through it entirely yet, but this looks like a good document. Something relatively short but addressing many of the questions that parents, especially new parents may have. It directly targets parents. However, it does discuss the transition to adulthood and adult living options, but, again, from a parent’s perspective. For example:

Preparing for your child’s transition to adulthood

The public schools’ responsibility for providing services ends when a child with ASD reaches the age of 22. At that time,
some families may struggle to find jobs to match their adult child’s needs. If your family cannot continue caring for an
adult child at home, you may need to look for other living arrangements. For more information, see the section, “Living
arrangements for adults with ASD.”

Long before your child finishes school, you should search for the best programs and facilities for young adults with ASD. If
you know other parents of adults with ASD, ask them about the services available in your community. Local support and
advocacy groups may be able to help you find programs and services that your child is eligible to receive as an adult.
Another important part of this transition is teaching youth with ASD to self-advocate. This means that they start to take
on more responsibility for their education, employment, health care, and living arrangements. Adults with ASD or
other disabilities must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education,
in the community, and elsewhere.