Sunday, April 05, 2009

Autism Awareness and Action Needed for Autistic Adults

Linda H. Davis in Still Overlooking Autistic Adults in Saturday's Washington Post reminds us of our neglect of autistic adults and the bill that will come due more and more with each passing day. She describes very colorfully the realities facing the United States and by extension Canada where we too have neglected to seriously address adult autism issues. She describes a US population of autistic adults larger than the city of Minneapolis. I recommend that everyone with an interest in autism issues read Ms. Davis' commentary and I commend her and the Washington Post for raising this issue.

How will this Autism Metropolis be funded? Who will provide the necessary care and attention that many autistic adults, including my son Conor, will need? Ms Davis describes the difficulty in drawing attention to the plight of autistic adults as compared to autistic children. She suggests that we all have a tendency to avoid contemplating the cute autistic child as a full grown adult and imagining the future. For Ms Davis, growing frailer with an incurable cancer, and the mother of a 22 year old son, the future is now, right now.

Ms Davis being the mother of an autistic adult male does not describe the challenges of caring for an autistic adult in the abstract, feel good nonsense of the joy of autism ideology. She describes some harsh realities:

A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.

Linda H. Davis calls for the discussion to begin now about how to care for autistic adults and she is right. She calls for such a discussion to take place in the United States. But we are also in dire need here in New Brunswick, and across Canada, of engaging in the same discussion. Such discussion is in fact long overdue.

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Mirela said...

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


Autism Reality NB said...

Thank you Ann.

Roger Kulp said...

This is a complicated problem,that calls for personalized services for every adult on the spectrum.A big part of the pronlem is,that a lot of autistic adults are not aware of the services that might be available to them,even if they are not offered where they live.

One example,is ABA.I am fairly sure most autistics over the age of twenty-five,have never had ABA,or if they did,it was ABA as it existed in the bad old days,

which is radically different from ABA as it has existed since the late 80s/early 90s.

Recently,I was told by someone in a mitochondrial disease group I belong to,that I ought to have ABA. I must admit,that I knew nothing about ABA in adults,having been brainwashed by that "window of opportunity" garbage,then I began looking around.

It seems that,beginning about 2001, there has been an increased use of ABA in autistic adults.

However,ABA is still practiced on a very limited basis in adults.Those who desire it,ought to be able to have it,but this should only be the beginning.

We need to recognize there are at least two generations autistics, whose lives were ruined,by Bruno Bettleheim,and the dangerous,and false beliefs he spread about autism.Beliefs that shaped the way autism was seen an treated,and seen in the thirty-five years after WWII.

It was Dr.Bettleheim,and those who followed his teachings,who caused serious damage,and setbacks to autistics.I would argue that we suffered as much under this evil and false orthodoxy,as African Americans did under the Jim Crow laws.We can ever really get anywhere until this is fully acknowledged.