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Does autism awareness finally mean something in Massachusetts?

When the state Autism Commission assessed the range and effectiveness of services for autistic adults, this much was easy: Massachusetts has virtually nothing to assess. Now, after years of advocacy efforts, that could be about to change. Last Tuesday, news came that several measures aimed at supporting autistic people have been rolled into an autism omnibus bill. On Wednesday, that bill passed unanimously in the House. The Senate will vote on it this week.

The bill was announced at a State House event honoring Autism Awareness and Acceptance Day. The event has traditionally been more ironic than celebratory. As a state, we’ve been largely oblivious to our autistic community, especially those age 22 and up.

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For most of our adults with autism (or almost any other developmental disability), state services are a fantasy. Current eligibility for such services is not just inadequate. It is among the very worst in the country, possibly the worst, according to a review last year by the Disability Law Center, an independent advocacy organization in Boston. Moreover, if those autistic adults have a serious mental illness that under existing law makes them eligible for state support, they have been almost without exception denied it — because they are autistic.

The bill at last recognizes the needs of autistic adults. Individuals who meet criteria for functional challenges will become eligible for support from the Department of Developmental Services — support that could help them gain autonomy and social and economic self-sufficiency. gisl

Massachusetts, like much of the world, is belatedly realizing that autism is not just for children. Countries, states, and organizations are trying to figure out how to help autistic adults capitalize on their skills and their desire for independence — an effort made harder by the paucity of research on adult services. Autism comes with challenges, but not all of those challenges are intrinsic to autism.

Why is the need so acute? Currently, the Commonwealth is allowed by law to deliver services only to adults ages 22 and above who are intellectually disabled — but IQ is such a poor measure of functional life skills that the DLC struggled to find other states restricting eligibility to this standard. Most states include a broad range of developmental conditions. (It’s possible Massachusetts is more competitive by other measures, like quality of services.)

Consequently, when autistic people in Massachusetts age out of public education, often with marketable skills, they lose the structure and guidance that worked for them in school. This makes a successful transition to independent living and the workforce far less feasible. Likely outcomes include isolation, unemployment, homelessness, chronic health problems, and tremendous emotional and financial stress on families. Support organizations routinely hear from aging parents caring for autistic sons and daughters, terrified to die, because who will step in then?

Providing services need not break the bank. “Often modest individual and family supports offer a great yield to the Commonwealth, in allowing families and individuals with disabilities themselves to work and lead independent lives,” Rick Glassman, a DLC attorney, testified to a legislative committee last year. LifeMAP, an individualized coaching program offered by the Asperger’s Association of New England, demonstrates the benefits of only one to two hours per week of services (of course, some autistic adults will need more).

The Patrick administration seems to get it. Most of our lawmakers in both parties seem to get it. The Department of Developmental Services gets it, and other state agencies are starting to: the Massachusetts Rehabilitation Commission has partnered with LifeMAP to more effectively place autistic clients in the workforce. The Department of Mental Health, after years of defensiveness and dodging, has pledged to stop disciminating against the autistic population.

In addition to DDS services, the new legislation will establish the Special Commission Relative to Autism as a permanent entity. Public school teachers will be eligible for a new certification in autism. The long-term housing and employment needs of autistic people will be studied, and families will have the option of pretax savings to cover autism expenses. The omnibus bill was orchestrated by Barbara L’Italien, chair of the Autism Commission, working with several legislators.

For thousands of autistic individuals, families, allies, and professionals across the Commonwealth, the decades-long wait for help might soon be over.

Lucy Berrington co-chairs the Advocacy Committee of the Asperger’s Association of New England, based in Watertown. She blogs about autism at Psychology Today.
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