In The Politics of Autism, I write:
Two demographic trends will influence autism politics in the coming decades. First, the identified autistic population will get bigger, particularly in the adult range. Service providers refer to this coming change as a “tsunami,” after a large ocean wave that is barely visible when it moves over deep water but packs great power when it hits land. Second, the general population will be getting older just as the autism tsunami arrives, complicating the policy response.
Susan Senator, the author of Autism Adulthood: Strategies and Insights for a Fulfulling Life, writes about Massachusetts:
Now the number of people diagnosed with autism is greater compared to decades ago: 1 in 68. And even though the CDC recently announced that the numbers may be leveling off, long vacation days have not gotten any easier.
There are something like 5,700 families in crisis like ours in the state who need help teaching their children safety and home, community and life skills. These families may also need help overnight to keep the child safe in the house.
The Arc of Massachusetts, a statewide advocacy organization, says on its website that “across Massachusetts, 18,000 families are caring for a family member with an intellectual or developmental disability in the home.”
Leo Sarkissian, executive director of the statewide group, said they are now pushing for the Legislature to increase the budget for supporting families in various ways: $15 million for this year and a $25 million increase to help families with older children and young adults. These increases would get more money to families to make the support “meaningful,” Sarkissian said, and more than just a few hours a week of respite. Increased family support would help hundreds of families, including those who have a young adult turning 22.
“This year 900 young adults will be entering the system, a 34 percent increase in just five years,” Maura Sullivan, the ArcMass director of government affairs, said. “So the Arc is also supporting an increase in funding for the ‘turning 22 budget’ and other critical adult services.”
In this era of community inclusion and accommodations, residential placements can and should be avoided. Last month Gov. Charlie Baker released a favorable budget number, with a $5 million increase for family supports. Now we need those numbers to be increased in the House and Senate to reach more of the families in highest need.
We were lucky to get Nat the support he needed, when he needed it. Now 26, Nat has learned enough independence as a young adult that he no longer lives in a group home. He has an apartment with a caregiver and lives just 10 minutes from us.
But others we know are not as fortunate