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Washington Post: "No one has real answers. They didn't then, and they don't now."

31dec09-looking_forward


Managing Editor's Note: Anne writes about author Susan Senator's recent experience with a son who has "aged out" of school services and the difficulty she faces in crafting a safe, meaningful adult life for him.  Susan is a good friend of mine and has been a force for her son Nat's school services  and now, adult programs.  Her novel DIRT: a story about gardening, mothering, and other messy business is a great read - and deftly weaves the family dynamic of husband, wife marital strife and siblings when autism is in the house.  Check it out at Amazon in paperback and ebook. Anne Dachel has been screaming from the rooftops for years "The adults are coming! The adults are coming!" and few have listened. This is an area where we can all agree - our kids will need services and care - most of them for the rest of their lives.

By Anne Dachel

Washington Post: "No one has real answers. They didn't then, and they don't now"

Washington Post: Tiger Mother to an autistic son

Albuquerque Journal: Mother's Fight for Autistic Son Never Ends By Susan Senator

This story started with the Washington Post and it was picked up by the Albuquerque Journal. Susan Senator talked about her mission advocating for her son now that he's aged out of the school system.  It's mammoth task and she's had to write her own job description. 

It brings back so many memories. My son is 25. How he survived in school until I started to homeschool him, I'll never know. In the second grade, the school system got a psychologist to come from Minneapolis (a hundred miles away) to figure out what was the matter with this weird acting kid. She told us, "Your son has autism. I don't know if he'll ever be able to live independently or hold down a job. We don't know much about autism--it's such a rare disorder. There's probably not another child in Chippewa Falls who also has autism."

Chippewa Falls is about 13,000 people.

It was devastating. I was totally on my own-no one knew anything. I knew lots of teachers, being one myself, and they couldn't help me.

I had to develop my own curriculum.

When John was diagnosed with autism I told his speech therapist the news and she said that she didn't believe it. She told me that she had met an autistic child once and he was nothing like John.

NOW, almost 20 years later, there are two other autistic children in this neighborhood. Every school has their share of autistic students. I'd have to be a complete idiot not to believe that something terrible is happening here. Why are we pretending this is normal and acceptable?

Here's what Susan Senator wrote:

I'm tired of being called brave. But being the mom of a deeply autistic young man of 22, I can't avoid it. Because I survived. Ever since Nat's birth, in the Autism Stone Age of 1989, I have had to be a Saber-Toothed Tiger Mother - or at least pretend to be one. From finding the right doctors to getting my town to do right by him, to also doing right by my other two sons, I have always had to be strong - or feign strength. What to expect when you're not expecting autism? No one has real answers. They didn't then, and they don't now. It has always been up to my husband and me.

I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked. I'm sad because I miss the comfort and safety of the old routines.

The other thing I hear a lot is that Nat is an angel, closer to God than others, here to teach me something. No, he's not. He is just a complex young man. He's not a spiritual messenger or a puzzle. The adult-services system, or perhaps the lack thereof, is the puzzle.

Helping Nat have a decent adult life is our family's greatest challenge - not Nat himself. We want him to have a life with something to do: a job, volunteer work; a place to live safely, cared for; days with a rewarding rhythm. These are things I've been working on since he was a teenager - along with his school. Those teachers had Nat working at Meals on Wheels by 14 and at Papa Gino's by 19.

Now Nat is transitioning to adulthood, he is finished with public education services, and he begins navigating the far more complex adult-services system. I've done everything "they" tell you to do. I attended workshops, seminars and conferences. I pushed to get Nat funding and to qualify for whatever programs might help him live as independently as possible. I know I can't afford a staff person myself, nor will I live forever.

I did my homework. I visited an adult group home before Nat graduated and did not like what I found. Care was adequate but lifeless. Some of my friends' children had it even worse: from regularly missed appointments to soiled, unchanged underwear. We've all learned that adulthood can be abysmal for kids like ours. And yet without the programs we've got - troubled though they may be - we have practically nothing. I cannot fathom what would happen to all of us without programs such as Medicaid and the other gossamer-thin safety nets.

It dawned on me recently that I am going to have to do more than act tough and tireless: that I have to become what they say I am. Because I have to face the fact that no matter how hard I push, we still may not end up with a good situation for Nat. If only there were a waiting list for a stable adulthood experience like those to get into the good autism schools. I know how to be on those.

I've tried for the past year to put together my vision for Nat: a group home of my own, with like-minded families and staff that we help choose. And every time I get close to succeeding, some piece or another does not fall into place. You can't get funding until you have a group. You can't get the group together until you have a house. You can't get the house until you have the funding.

And so, on top of all the emotional upheaval, Nat's turning 22 is a Catch-22. Funding is scarce, and the programs can be iffy because of it. As always, there is no one to ask; every expert and professional has a different story. In the end, I'm figuring it out as I go, only now I am no longer a young mother.

I posted this comment:

Susan Senator tells us exactly what's out there for young adults with autism. It's an abyss.

What kind of country cares so little about their disabled citizens that they are literally turned out on the streets by the schools with nowhere to go?

If there's been no real increase, if autistic adults have always been here, just called something else, then what did we do with them? Why does Senator write like this? Why isn't the growing crisis surrounding autistic adults a national issue? Why is there more and more coverage like these stories?

CT: New autism program only underscores extreme need

NJ autistic adults lack programs

What does it tell us about autism? Why is autism always a childhood disorder? What will happen when hundreds of thousands of additional autistic children age out of the school system and become dependent on the American taxpayers?

Anne Dachel, Media editor: Age of Autism

Comments

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ASD and proud

"What kind of country cares so little about their disabled citizens that they are literally turned out on the streets by the schools with nowhere to go?"

The country that has not ratified and will never ratify the United Nations Declaration of the Rights of the Disabled. That's what sort of country, Anne. What country am I talking about?

The United States of America.

So much for freedom.

Martha Moyer

I understand the frustration of the parent with a 26 year old with autism. I have gone through it all. My son is age 38 now. A group home worker of the past stole everything that he owned. She felt she wasn't paid enough so she took the toys and clothes of the individuals. Took years to find her out.

Workers denied him use of the toilet.They refused to address the toileting issues on his plan. I didn't know that because they told me they were doing everything. A huge final impaction and ruined bowels was what happened.

My son was put in a daycare where he slept all day long. He was there for eight years after he aged out. He started in a day habilitation center where they did activities and he went there on the disability bus. He had never been asked to pay the bus driver and no one trained him. (daycare prior paid up front). When he was asked to pay he didn't understand and pushed the bus driver so he couldn't go to the program anymore. The day worker wouldn't ride the bus there and stay with him until the day was over.

Because I took over as his HCBS provider, I have hired a day worker who takes him out in the community for five daily hours during the week. He has his own goals and lots of opportunity for fun and learning.

This is the best we can do for my son. The bowel issues have really impacted the possibilities of work. Social Security recently asked me to fill out a form about the possibilities of his working. When I told them about his issues they decided not to question the case further. I cry because he was denied the possibility of work. When we tried it in the past then he had such bowel issues that we had to cancel out.


Jan

My son is 26 and has been out of the school system for 4 years now. In the 6 months preceding his leaving school I cried more than I did the first 5 years after his diagnosis. I HATED what was happening and hated that it was basically beyond my control. MY Andrew was going to have to go to a "Day Hab" Program with 1 staff to 7 adults.
The program promised many things. They said they wanted to be on the cutting edge for people with Autism. They wanted to put the right supports in place.
In the first 6 months Andrew was there, the program had a couple of trainings on Autism, hired an art therapist and even created a Sensory room.
Within a year it was all gone. The sensory room was closed when two of the clients (who didn't have Autism) were found alone in the SI room making out.
The art therapist was let go partially because of money but mostly because I think they didn't understand the benefit of Art therapy
My son has MANY challenges because of his Autism but he wants to work, he LOVES to work and he LOVES to be active. In the summer he got to work at a farm for a few hours a week and he loved it. He is an artist. He loves to play basketball every day and he loves to swim.
At his day program Andrew gets to volunteer 1 hour a day 4 times a week. Volunteering is the HIGHLIGHT of his week! The rest of his day is spent, sitting in a room with other adults who are doing kindergarten coloring sheets, puzzles etc... or he can go to another room to walk on the tread mill or the elliptical.
A few times a week they have health and safety trainings. He is unable to get anything out of these trainings because of the way the material is presented.
It IS a Day Habilitation program (Definition of Habilitation = the assisting of a person with achieving developmental skills when impairments have caused delaying or blocking of initial acquisition of the skills. Habilitation can include cognitive, social, fine motor, gross motor, or other skills that contribute to mobility, communication, and performance of ACTIVITIES OF DAILY LIVING and enhance quality of life.) He should be getting therapy but he doesn't. No sensory therapy no speech and language therapy, nothing.
One I asked if he could have a staff person sit with him twice a week for 10 to 15 minutes to practice relaxation skills with him. I was told they didn’t have the staff to do that.
I desperately want to have a program set up from home for him but it is going to be one damn difficult job. I am trying to scrape funding together for him but it is likely that he will lose about 10 hours (or 2 days a week) in services.
I’m forced to choose between something that is completely inappropriate for him to get the hours he needs or to try to set up something that will vastly improve his quality of life and loose many hours.
I have never been sadder, more frightened or more frustrated. There is little help for adults with Autism or for the parents who want to make good things happen. (If I had money NONE of this would even be an issue!!)
I had high hopes that by now there would be many other parents who wanted to fight the system with me for our children's sakes. I can't find anyone. It seems everyone either wants a group home or are willing to settle for a day program or they are just feeling too old and to worn out to keep fighting.
I'm feeling old and worn out too but I can't keep looking at my son everyday and thinking about how crappy his days are. No wonder he is so upset and irritable.
He was screwed out of a normal life because of vaccines. I don't want him screwed out of anything else. He deserves so much more than what he is getting.

Martha Moyer

Changes are happening all over and it is difficult to know what new rules or attempts to kick out services will happen tomorrow.

I have a son born in 1973 who has moderate autism and mental retardation (extremely speech problems) and an institution ruined his bowels. Couldn't sue because Tx. has Sovreign Immunity...rule of the king..no one can get their day in court if state hurts them.

I have found sophisticated equipment to evacuate his paralyzed bowels. Insurances and Medicaid refuse to pay for equipment and supplies. Fighting that battle!

I look back now and realize that his severe behavioral outbursts of the past were caused by terrible stomach cramps. I spent his early years sitting by the toilet just trying to toilet train him and a toilet trainer, called Tommy TT by the way, of a local institution was there. But no luck!

Son can't work. However, I got him Section 8 housing and he lives in his own apartment with help from HCBs Medicaid funds to pay staff.

I am an only child...have married younger son...his emphasis is on building a family now. I have become an HCBS provider to oversee my son. The past agency neglected him. Very stressfuul! I have severe arthritis. Am age 73. No retirement for me. Worry what happens as I can never die. Where is the help I need so I can really retire?

Kristin

Well, that's just about the most terrifying thing I've read all year...har har har.
Joking aside, reading this article made me physically ill to think about the future for my now 7 year old, and his NT siblings. I suspect it will be for him like it is now: too many kids, not enough programs. He has received very little to NO early intervention. The only thing "real" he has had is private speech therapy 2x per week paid for by medicaid, but 90 minute per week is hardly early intervention. Other than that: nothing. He used to get babysitting at public school until I removed him after he was bitten and terrorized repeatedly by other students (who also received no supervision and definitely no instruction). I do expect more from public schools but the truth is they do not have unlimited funds. The government does not have unlimited funds. You cannot get blood from a stone. I have all but decided there will be *nothing* available for my child when he comes of age. How could there be anything left after the first couple rounds of tidal waves hit?
Prevention is the only way out of this (and I do not mean abortion). I will continue to advocate for prevention because I think stopping the gap is the only way our "kids" can ever get any kind of real help for a meaningful life.

FLmom

I was afraid to read your article because I knew that I would not be happy with what I would read. I'm not saying that I'm surprised because I'm not.

I have been fighting the restraint and seclusion battle since my son was 12 years old and we have made some progress all through the states but there is so much more that is needed. The horrors of restraint and seclusion in the public school system only seems to grow worse in group homes and state run programs for our children as they grow older and out of the school system.

My son is now 19 years old and sometimes I wake up in the middle of the night worrying about what will happen to him as he ages out of school. We have 2 1/2 years left in the school system and I don't see anything in Florida for adults with autism in the way of fun activities, jobs or places to live. I went to visit a work program a few weeks ago and left crying. Even thinking about it now makes me want to cry. Who will help him, understand him and love him the way we do?

I know that it's time for me to move on from R & S and start advocating for living and work programs for our children who are so close to becoming adults. It's a scary thought because this world is not prepared for our children to grow up and neither am I. Our children are "America's forgotten children." It's time for us to change this so our children have a chance to grow up in programs that will offer them support and safe places to live and work.


Regards,

Phyllis
Families Against Restraint and Seclusion

HFAmomto3HFAgirls

Fear of the future is why I desperately seek to recover my most asd child. I too fear for that charismatic leader with a solution. Something along the lines of 'life unworthy of life'. The system that made them ill can NOT be trusted to make them whole. Given it continues to damage children today it will invariably decide to just 'delete' the mistakes of the past at some point.

Quality of life and all that.

Mark L. Olson

This is exactly why I founded LTO Ventures. To develop live/work/play communities for adults with autism that are self-sustaining without government or insurance funds. (www.ltoventures.org)

My daughter is 16, nonverbal and will never be able to live independently. I am an only parent, and while I like to think I'm immortal, I'm pretty sure I'm not.

I don't think the choices that exist for her are what she wants or deserves, and I have grave doubts about the reliability of government funding. So I am creating an alternative. We all have to be warriors for our kids.

Gayle

The future of adults with autism, like my son, is an uncertain one if our society continues to ignore the reality of the "autism epidemic." No these children aren't going away, but coming in ever increasing numbers.

Judith

Here is a statement from Washington State's Morningside Services, which trains and places disabled people in jobs.

http://www.morningsideservices.com/documents/LegislativeFactSheet2011_001.pdf

Kim Davis

I have 2 sons with autism, aged 26 and 7. Both have HFA/Aspergers. Despite the fact that my adult son is intelligent, articulate, and a caring individual, there are no support services in our area that would enable him to live independently. If that's the case, then what does a parent of a low to middle functioning autistic child do? It's frightening.

We've been lucky enough to recover our younger son almost completely. However, despite having a medical exemption for vaccines, the school district will not allow him to attend school. Long, complicated story, but the end result is I am homeschooling him and so worry about his future as well.

I'm afraid that once the system is flooded with autistic adults, the programs are not going to increase and some may disappear altogether.

I worry not only for their future, but for their lives. All it takes is one charismatic leader to find a "solution".

Teresa Conrick

Meg is 18 and the horizon is dark and stormy. There is no serenity with having a child injured by vaccines. There are no adult programs aimed at the many medical and behavioral issues. Many states have no programs at all appropriate for nonverbal adults with acute pain, perseverative behaviors, aggression, food allergies,seizures, and GI issues that render them unable to use a toilet 24/7. Then you have the adults who can talk yet can't make a friend, can't socialize appropriately to keep a job and meltdown if they can't watch a certain movie or talk nonstop about rocks. The coming numbers will resemble war victims coming home in waves. All will be affected, some more than others, and there needs to be money and planning happening now to aid so many families.

It's a hard thing to discuss but it is reality.

Aimee Doyle

I read Susan Senator's article. It echoes my own experience. My son Rory was also born in 1989 and was diagnosed in 1994, when our neurologist told us that the rate was "1 in 10,000." He's grown up to be in the middle of the spectrum, with some language and ability, but definitely not HFA (High Functioning Autism) or Asperger's. Despite intensive early, middle, and late intervention, with just about every possible treatment and therapy, he is far from recovered.

This past year he aged out of the school system. Dealing with adult services has been even more frustrating than dealing with the school system or the medical system (I wouldn't have believed that was possible). Programs are systemically inadequate and getting anything accomplished takes months or years. Bizarre things happen, too, such as Maryland's Developmental Disabilities Administration somehow losing track of $34 million dollars! We live in Maryland, and the loss of that money impacts every disabled adult in the system.

It makes me angry and sad. He deserves so much more. All of our children do. With the current state and federal budget issues, it is hard to be hopeful about programs and services for our adult children. But I persevere, even on days when hope is in short supply. My goal for the New Year is to figure out how to persevere more effectively.

Aimee Doyle

Sylvia

The world is most definitely not prepared for the onslaught of adults with autism about to fill the streets with nothing to do. My heart breaks to think of suffering these innocent people will endure at the hands of a society that does not expect them or want them.

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