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Autistic, Adult, Alone: When Mom or Dad Dies

Wake up callBy Anne Dachel

Internationally governments and doctors have looked on as autism consumed a generation of children.  No one in authority has ever expressed alarm.  There's never been a demand for answers.  Officials readily admit that there's nothing they know for sure about autism and nothing they can really do about it.  Meanwhile, a generation of disabled children is entering adulthood with nowhere to go. 

This adult woman with autism is 43.  Her circumstances are dire.  This may be happening in Canada, but it'll be the same here.  All those who've assured us for years that an epidemic of developmentally disabled children is normal and acceptable need to tell us what we're going to do.

Aug 12, 2014, Ottowa Citizen.

Jennifer is 43. Her mother, Cecile, was her main caregiver until she died in April, struck by an aneurysm at age 79, and dying on Easter Sunday. Her father, Arnold, is 90, a retired school caretaker, but so gnarled with arthritis and heart disease, he can barely get from his bed to his recliner.

"I feel helpless," he said.

This has left the bulk of the care to Caroline, 60, her sister, who lives in the white house with the big wood stove, about five kilometres from Eganville, on 140 acres of hay and tough sledding....

A report by a study group last fall said there are 12,000 people with developmental disabilities waiting for supportive housing.

The consequences for families can be crushing, the report said. Chiefly, there is burnout. The report called for enough funding so that any parent over 80 could be assured of placement of their disabled adult child within six to 12 months.

A committee of MPPs also called for an end to service wait-lists, which can stretch years, and pointed to housing as an urgent need....

Anne Dachel Book CoverAnne Dachel is Media Editor for Age of Autism and author of  The Big Autism Cover-Up: How and Why the Media Is Lying to the American Public, which goes on sale this Fall from Skyhorse Publishing.

Comments

Roger Kulp

One thing that is never talked about,is treating older adults with autism,so they might be able to improve to where they could live on their own after mom or dad dies.With all we have learned about all the medical problems that can contribute to autism,and how to treat them.That by treating them,the autism itself improves.Too much of the focus has been on children.Instead of trying to improve the lives of autistics of all ages.

Most of you know about me,and how I lived most of my life with only an autism diagnosis,an all sorts of unexplained medical issues.How thanks to a post at AoA,at age 48,that I wrote with a lot of help from my mother.I found a DAN! who was willing to run tests,that started me down a road that eventually led to Arkanas Childrens Hospital,and a diagnosis of a genetic folate metabolism disorder,with folate receptor autoantibodies,and probable mitochondrial disease,that I am still being worked up for.

A year before I wrote this post,I had had another autism evaluation,that had placed my adaptive and practical behavior level of a child of eight.I finally read the report a few weeks ago.Papers had been written up for my mother to sign to put me in a group home,and my mother refused.

My mother died in April of 2012.The hospital where she died found out about this,and sent adult protective services after me.By this time,I had been on leucovorin,B12,and GFCF three years.I was not quite where I should have been,but I had improved to where I could demonstrate to APS I could live on my own.I am still blown away at the improvements that have come since.

A few months later,in September of 2012,a woman posted in one of the autism Yahoo groups I belong to.I can't help but wonder if I inspired her.She was in her 70s,with an autistic daughter in her late 40s.This woman had put the daughter in institutions and group homes since she was four years old.The mother was told the daughter was "profoundly retarded".In September,2012 the mother snuck the daughter out of the group home,and took her home.The daughter was very sick,malnourished,and weighed under ninety pounds.The mother was able to take the daughter to a doctor that found a few serious autoimmune problems.We heard back the other day.Three years later,with treatment,biomed,and GFCF,the daughter is now verbal,her health and functioning had improved to where she and her mother were taking a cross country camping trip.The daughter will always have some degree of intellectual disability,but will be able to live an independent life.

Older parents do not need to feel helpless,but no one is going to help you treat your adult child with autism.This is something families are going to want to do all on their own.The sooner you start the better.In an adult,it might be two or three years before you start to see real improvement,and five years before you get to what you could call recovery.

Eileen Nicole Simon

Martha, thank you for sharing your grief. Following is an email I sent to my son's case manager this past Thursday, outlining our situation decade by decade:

Hi Alan,

I am sorry I did not know about the meeting you will have with Anders this morning.  He asked me to attend, but I don't want to horn in where I'm not welcome.  I have one big question: Are you able to keep track of a new law, passed by the MA legislature, that mandates the Department of Developmental Disabilities Services (DDS) to now include people with IQ greater than 70?

I don't think housing with lower functioning autistic people would be appropriate, but services like supported employment would be very helpful.  The support person assigned should be knowledgeable of special problems like difficulty asking for help.

Lifespan care for people with autism is in the news lately, "life after 21."  Now we are up to life after 51 for Anders.  I started a whole new career (nursing) after the age of 50.  Anders wrote about Julia Child's career beginning at age 50.  I hope looking forward to greater productivity can be a focus of support for Anders.

After 21 -  was spent drifting from home to being lost, to state hospitals (Northampton, Taunton, Bridgewater), Eikos House in Brighton, coming to the attention of the police, jails, and probation.

After 30 -  began the greatest growth period for Anders, at Westborough State Hospital.  Most important was the job he had at the Clarke Workshop.  Seeing the bird feeders he assembled for sale at the entrance of Caldors as Christmas gift suggestions was a truly great emotional moment.  "That's my work!!!" Anders exclaimed.  For the first time in his life he felt like part of the real world.

After 40 -  was his discharge to the "community" group home (Bridge Street), with alarms on all the doors.  He was so unhappy that he ran away, five years ago (March to May 2009).  "He's not ready," was the response of staff during the 6 years (2003-2009) for everything, GED, supported employment, etc...     

After 50 -  what can we look forward to???  It was very distressing to learn a year or so ago that DMH cannot guarantee housing for everyone.  "Recovery is real" is their motto, which implies that substance abuse treatment is the new DMH mission.  This is so infuriating.  Substance abuse could be avoided with appropriate education in the schools.  Students should graduate knowing that drugs damage the brain, and beyond dementia maybe the most disgusting outcome really is chronic constipation...

Anders deserves better.  He is now a published author.  See our two memoirs, "Memoir of Discovery" and "Milieu Research" on amazon.com; search for Anders Cody Simon.  Still a part-time day-job would be helpful, as it is for me in my 70s still.

Please look into DDS services for Anders.  He needs direction.  He does not ask.  Unlike other people at Bridge Street, he did not have a period of normal development in childhood preceding onset of mental illness.  His whole life has been a process of "recovery" and I hope that can be encouraged.  DDS (not a PACT team on the streets) may have something to offer, and maybe he could become one of their success stories. 

Sincerely,
Eileen Simon

Martha

My son age 40 with autism, bipolar, intermittent explosive disorder, OCD, IDD, minimally verbal, bowel health issues is under my watch. I am age 76 and he is in a waiver program called Home and Community Based Services. In order to have his bowel equipment paid for I had to study to head up this agency of one to care for him. The program impoverishes me to the point where I can hardly make it. I can not receive pay as there isn't enough money for that. My billing and accounting work for free. They are old like me. We can not do this much longer but there is not enough funding to train someone to take over. Individuals in our 16 state schools in Texas are now getting $250,000 per person per year for care. Our expenses pretty much eat up anything we have. When I ask for help then I am told, "Too Bad...there are no plans to serve adults."

Twyla

Noooooooooooooo!!! We're never gonna die or become disabled by old age! We can't!!

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