National Council on Severe Autism

Autism is a ”spectrum disorder” which means it impacts people differently. People with severe autism:

• Require continuous or near-continuous, lifelong supports and supervision

• Are often are nonverbal or have limited use of language

• Often have intellectual disabilities

• Many struggle with emotional regulation, resulting in behaviors that interfere with safety and well-being.

• About 25% of people with autism have severe autism

• Here in New Jersey that means about 30,000 people have severe autism

• People with milder forms of autism have made amazing progress in the past few years gaining acceptance and understanding — and we applaud their success!

• When people think of autism now they often think of business leaders, celebrities, TV doctors and hidden super talents rather than our community

• When the press writes about autism, they frequently forget to even mention we exist

• Unfortunately this has further marginalized our community

NCSAutism is working to fix this via our Authentic Awareness initiative

One the one hand, we face the same issues facing everyone in this country and everyone with a disability.

But the shift in focus away from severe autism has created unique and pressing challenges.

• The severe autism community is frequently excluded from representation on decision making and advisory boards

• Only tiny portion of autism medical research dollars focus on the severe community

• Employment rules are being rewritten in ways that away even the possibility of a job from many with severe autism

• Housing rules make finding homes for our population especially difficult

• And other rules can make available housing options far less safe for people with severe autism

• Existing training requirements can leave professionals ill-equipped to provide for the safety and well being of our community

• Existing compensation models leave many professionals unwilling to take on the added challenges of working with out community

The list goes on. Bottom line is our community is often suffering.

We are a small community — a minority within a minority. We need to do everything we a can to speak with a strong loud voice.

Please get involved:

• Join our mailing list to keep up-to-date on what is happening and how you can help

• Follow us on Facebook.

• Come to our meetings

• Add your voice to our efforts