Websites:
·
Autism Speaks (www.autismspeaks.org)
-Large national organization
dedicated to the funding of autism research and patient advocacy. Good source
of information about all facets of current autism research. It provides
practical information guiding families with education about the disorder and
links to resources.
·
First Signs (www.firstsigns.org)
-Aims to educate parents,
healthcare providers, early childhood educators, and other professionals to
ensure the best developmental outcome for every child. Their mission is to
improve screening and referral practices and to lower the age at which young
children are identified with developmental delays and disorders. They have
online resources for families regarding the screening and diagnostic process for
these disorders.
·
Autism Consortium (www.autismconsortium.org)
-Regional network involving all
of the major pediatric medical centers (BMC, Children’s, MGH, Tufts) which
coordinates research initiatives as well as providing information regarding the
diagnosis and treatment of autistic spectrum disorders to help provide a roadmap
for parents. They have a searchable database for local therapeutic providers
and community resources on the website. This is an excellent starting point for
families gathering information.
·
Asperger’s Association of New England (www.aane.org)
-Organizational
mission is to foster awareness, respect, acceptance, and support for individuals
with Asperger Syndrome and related conditions and their families. Website
provides access to a broad array of educational and advocacy resources and
services. They also sponsor a number of live events/lectures relevant to
families coping with the disorder.
·
Let me
Hear Your Voice: A Family's Triumph Over Autism (1993)
by
Catherine Maurice
-An
extremely well-written memoir that chronicles the personal struggles the
Maurice family encountered while helping their child recover from autism.
While some of the factual information is a little bit dated (since then, the
average age of diagnosis is much lower, and applied behavioral analysis
(ABA) is now well accepted as the current "gold standard" of treatment),
their experience in managing their autistic child remains relevant. Mrs.
Maurice honestly describes her experience trying out several different
"therapeutic" approaches to autism, and her initial reluctance, but ultimate
reliance on intensive behavioral therapy to help her child. The book
provides a nice explanation for how ABA therapy is practiced. The message
of a hope of recovery when utilizing scientifically proven strategies (such
as ABA) to treat autism is invaluable. This book is strongly recommended
for any parent struggling to care for a child with an autism spectrum
disorder, and is a fascinating read for anyone with an interest in the
topic.
