Dachel Media Review: Adults with Autism
By Anne Dachel
Jan 31, 2013, San Jose Mercury News: Long-term needs of adults with autism is focus of Jan. 10 meeting
Morgan Autism Center is hosting a "coffee klatch" on Jan. 10 that will look at "Adult Housing and Lifespan Care Solutions Initiative."
Scott Badesch, president of the Autism Society of America, will be on hand for the informal discussion about the adult housing and services shortage crisis in California and across the United Sates.
A recent survey by Autism Speaks of more than 10,000 people with autism or connections to someone who is autistic found just one in four caregivers is saving for the future housing needs of individuals who will need it.
The survey found, "The needs of adults with autism continue to far exceed the available resources, leaving a generation of people with autism and their families in a programmatic, financial and personal limbo.
I find it amazing that no one is really alarmed about the impact all these kids with autism will have as adults. Why can't young autistic adults go where adults with autism have always gone? Why can't anyone tell us where that is? And if all the autism is just a new name for an old condition, how have "the complex needs of adults with autism" been dealt with in the past?
Someone needs to point out that the reason only one in four caregivers has been saving for future costs is because of the overwhelming financial burden of raising a child with autism. We have to realize that autism is a disorder that primarily affects CHILDREN. No one has ever shown us a comparable rate among adults--especially adults with severe autism. With a rate of one in every 50 children, the taxpayers will eventually be responsible for the cost of the autism epidemic.
Roger, thank you for the link to NAMI’s PACT description. In Massachusetts PACT’s mission is to the homeless, I think. Finding shelter for everyone during this recent cold snap has been difficult.
Jill, thanks for the sfautismsociety.org link. You have put a great deal of thought into your overview of adult housing options.
Vickie, thank you for your frank discussion of how much on the edge our children live. Your comments are very helpful to me. I have been the target of much disdain for “allowing” my son to make use of homeless shelters. I have been trying to write about some of our experiences. How few people realize the difficult situation we are trying to cope with?
Posted by: Eileen Nicole Simon | January 04, 2014 at 07:53 PM
Eileen, I know it varies by state, but being homeless or at risk of being homeless, is sometimes the key to housing. I have had several professionals tell me to drop my son off at a homeless shelter, let him spend 4 nights there, and the state would take over the responsibility for his housing. One shelter director even told me that they recommend that families bring a car to their parking lot, let their loved one sleep in the car overnight for the 4 nights, and they will keep an eye on him to make sure he is safe until he has met the 4 nights homeless criteria.
To date I have refused to do this. It is a sorry state of affairs when we have to force our adult kids to become homeless in order to provide appropriate housing for them.
Posted by: Vicki Hill | January 03, 2014 at 09:52 PM
The Mercury News article was kind to mention our Adult ASD Housing and Lifespan Care Initiative but failed to link to our website: sfautismsociety.org, which contains further information about the crisis and our efforts.
Jill Escher
President
Autism Society of the San Francisco Bay Area
Chair, Adult ASD Housing and Lifespan Care Initiative
Posted by: Jill Escher | January 03, 2014 at 09:36 PM
Nicole,thank you for this comment.It shows just what kind of "care" adults with severe autism are given,assuming your son does have autism.It proves that a great many people who supposedly "care" for adults with autism,treat it as if it were a psychiatric disorder.I just pulled up the page from the NAMI on the PACT program.
http://www.nami.org/Template.cfm?Section=ACT-TA_Center&template=/ContentManagement/ContentDisplay.cfm&ContentID=49870
Much of what they say about the type of people who would use the program would fit people with more severe autism.There is lots of wonderful sounding stuff about "rehabilitation" and "quality of life",but what is the things listed under "treatment"?
What are the key features of PACT?
Treatment:
psychopharmacologic treatment, including new atypical antispyschotic and antidepressant medications
individual supportive therapy
mobile crisis intervention
hospitalization
substance abuse treatment, including group therapy (for clients with a dual diagnosis of substance abuse and mental illness)
I don't think I need to say any more,other than this is the type of "treatment" given to autistics,ever since the time of Leo Kanner.All that's missing is electroshock treatment. My guess is it's not much different at group homes all over the country.
The "complex needs" mentioned here simply were not addressed in the past,period.In school were dumped into special education classes,with very little specialized attention.Meltdowns,self abuse,or wandering was looked at as behavior or discipline problems,or simply trying to get attention.I was stunned when I learned it was common practice for autistic children to have their own personal aides in school.
While the number of autistics in their 40s,50s,or 60s,with real sickness as the cause of it,may be much smaller than those 25 and under,but we are out here all the same.Most of us are not the Darryl Hannahs of this world.The lucky ones have lived with parents all of their lives.The rest have ended up in group homes.
Other than me,few if any,have ever gotten tested for any of the immune,metabolic,mitochondrial,or methylation disorders we now know are related to autism.Testing on a large scale of adults known to be on the spectrum,would be the only way to find out how many are also sick like this.MAPS doctors are,for the most part,the only ones willing to do such testing on someone whose only diagnosis is autism.
These diseases can be diagnosed and treated at any age,just as autism can.Treating these underlying diseases leads to the best hope for independent living.The problem is the older generations have not had the chance to find out if they have them.
Posted by: Roger Kulp | January 03, 2014 at 04:55 PM
On the subject of Adults with Autism.....
The movie Anchorman II will resonate with the community of vaccine injured families for two reasons:
1) The depiction of the news media is spot on. Putting ratings above substance, and burying negative news about sponsors and advertisers is part of the plot.
2) The character Brick (the weatherman) is described in Anchorman as being "mentally retarded" with an IQ of 80. Anchorman II develops the character in a much more subtle and different manner. In addition, Brick is shown interacting with his love interest Chani Lastname.
The most accurate description of Brick's character, and Chani's, based on DSM-IV, is they are individuals with features of autism. No kidding. What you see are communicative and social difficulties- including meltdowns and anxiety attacks- and NO features of mental retardation.The scenes of Brick and Chani together seem to be an attempt to create a window into the world of autism, I would not be surprised if the person who wrote those scenes is "quirky" or perhaps has lots of experience with close family members ASD. I was surprised by this plot element- it is intelligently and sensitively handled. When you see it, you will have a flash of recognition.
I am curious if other folks who see Anchorman II will pick up on this theme-
Wishing all a peaceful 2014.
O/S
Posted by: Ottoschnaut | January 03, 2014 at 12:19 PM
My son is 51 years old. He lives in a group home for mentally ill men. He was discharged from Westborough State Hospital to this “community” placement 11 years ago (in 2003). At his last “Community Based Flexible Supports” meeting, I was told that the Massachusetts Department of Mental Health will no longer be able to guarantee housing for all “consumers.”
“Where is he supposed to live?” I asked. I was then asked if he might be able to live at home, with me. I am in my 70s. Is there something wrong with this picture? What if I had Alzheimers, and needed 24/7 care?
“Is he likely to end up homeless?” I asked, “What then?” Then I was told about PACT, the Program for Assertive Community Treatment.
“Recovery is Real,” is the ridiculous claim made by the Dept of Mental Health.
“What is the recovery plan for my son?” I asked. The sappy reply was, “Recovery means different things for different people.” Wow, they even presume to be able to redefine the meaning of the word recovery.
Why haven’t I saved money over the past four to five decades to afford housing for my son? Will this be part of the new normal for so many families dealing with autism?
Posted by: Eileen Nicole Simon | January 03, 2014 at 09:58 AM
"The needs of adults with autism continue to far exceed the available resources, leaving a generation of people with autism and their families in a programmatic, financial and personal limbo."
At least this statement .. albeit belatedly .. makes reference to a "generation of people with autism" .. which raises the questions?
#1 Where did the "autism generation" come from?
#2 If this is the first "autism generation" .. it cannot be caused by genetics .. otherwise .. it would be the first time in recorded history that genes caused a similar disorder .. AND .. those "genes" would be easily identified having only surfaced in a single generation.
#3 If this is the first "autism generation" .. it is ludicrous to suggest ANY of the prevailing "research" that blames .. older parents, pet shampoos, freeways .. all of which have been around for generations PRIOR to the "autism generation".
And so .. the question remains:
What could have possibly caused an "entire generation" to arrive at the same age .. all requiring "Adult Housing and Lifespan Care Solutions" . that past generations since the beginning of mankind .. did not require?
AND THE BAND PLAYS ON
Posted by: Bob Moffitt | January 03, 2014 at 06:22 AM
And let's face it, the people who are aging out right now... just the TIP of the iceberg.
Posted by: Kristine | January 02, 2014 at 11:32 PM