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March Forth!

ForcedmarchBy Kim Stagliano

Do you remember the old joke from grade school?  "Which day of the year is a command?"  "MARCH FOURTH!"    My daughters are now 21, 19 and 15 years old. We're marching forth, but I can promise you it's a forced march, courtesy of autism. What's a "forced march?" 

(military) A movement on foot by soldiers or military prisoners, who must, in order to satisfy a military requirement, travel at a speed or in adverse conditions that would normally tire them excessively.

Can we talk about being excessively tired?

Today I am having my oldest daughter's final IEP meeting before she ages out of school for.... for.... forever.

I've targeted a day program for her and met with the team about getting her a placement there.  It's really quite nice, believe it or not.  It's an artists cooperative and housed in a real art studio.  It's bright, airy, not at all "institutional" and I think she will have a safe, happy time there. At least to start.  Her program will be fully funded by DDS with a one to one assistant.  It's a 3:1 ratio program. Mia will have 1:1. This is rare.  Why? How? Because I have been in the system for five years and have a case manager who taught me the ins and outs of what I would need at age 22. 

I was clueless.

I thought 22 was a lifetime away.

I was wrong.

I know others locally who have kids who are also aging out  - and they are SOL - without funding. Why? Because thev never got into the DDS system - or they did so too late, so budgeting was already in place and did not include their children.

If you have a child on the spectrum over the age of ten, I implore you, as hard as it is, as far away as you think 22 years of age is, to contact your state department of disability services.  Ask a million questions about how to get into the system so that when or even IF your child needs the services, the funds are there.  If you recover your child before that time - amen and pass the gravy.  If you don't, you need services.  Even here in blue state Connecticut, our programs are being slashed by a governor who is a Democrat.   Getting in by age 14 meant my girls were on the list for what funding would be needed at 22.

We're all on this forced march. We're moving forward and fast. We are excessively tired.

No one cares.

Keep marching forth. It's all we can do.  Call DDS. Today.

Kim Stagliano is Managing Editor for Age of Autism.



Jenny Webster

Gavin "aged out" by 17 because of medical and behavioral issues that made school impossible. I'm a single mother and I've been unemployed because of his autism for so long I don't even know... 10 years? We moved and got bumped because these lists don't transfer state to state.
There needs to be some national resource. Equal resources for all. Our future? It looks like I will be choosing between homelessness or putting him into an institution. We're in survival mode and it's not going to get better.

Birgit Calhoun

Judging by Forrest Gump autistic adults are successful and able to do things, just a little differently.

Many, even very bright, autistic children are not able to make it on their own because of their inability to hold a job. They might find one and then lose it over and over again until they give up. Autistic children also get depressed. They need help and people have this false idea of "happy go lucky".

It's not that way. Here in California where we live you have to plan to support your kids even when they are not autistic because just a place to live requires a professional's salary. Autism is a real drag on everything you do once the kids age out.

Birgit Calhoun

Without the DDS we would have been somewhere else. I can only say those people were necessary for the functioning of the rest of the family. Here in California things have changed enough that you can get paid for giving care to your own child now. That used to be different and in order for us to still be able to survive at the time we had to find a care-giver family so that I could go back to school to make a living because my husband was on disability himself. We would have been sunk if we had not had assistance. Yes, get into the system. All kids are entitled to schooling, no matter how severe the disability is.

Anne McElroy Dachel

Kim, I've seen the photos over the last decade of your daughters growing up. Beautiful, beloved children whose parents are doing everything possible for their support and care. And you're clearly thinking ahead. Incredibly, so many parents are trusting in a system that refuses to recognize something is wrong. I work with a number of autistic children who are also aging out of school. One dad asked the teachers at his daughter's 11th grade IEP about what's ahead after high school. The faculty couldn't give him an answer, but he was told that they were sure there'd be something. Now his daughter is 21 and he's discovered that what's available are things like adult daycare with programs serving mostly developmentally disabled older men. It's a scary situation for a parent with a non-verbal young adult daughter.

Somehow we're going to have to learn to adjust to adults with autism. (No one has expressed alarm over where all the children on the spectrum are coming from.) Mia is among the first wave of young adults coming ashore. Fortunately you were able to secure a good place for her. Many are not going to be so lucky. And as more and more and endlessly more children leave school, I can't imagine how we're going to be able to provide for everyone.

The big lie about autism--that it's an endemic condition that we've never addressed--is going to be harder and harder to spin. Right now we see ABC's John Donvan and Caren Zucker promoting their book, In a Different Key. They're reprimanding all of us for neglecting this disabled population until only recently.

In the Feb 27, 2016, WBRC story from Birmingham AL, First man diagnosed with autism from Mississippi, http://www.wbrc.com/story/31333806/first-man-diagnosed-with-autism-from-mississippi the spin was clear. The message was that autism is normal. It's just the way some people are. Donvan wants us to "embrace" autism and look to how Forest, MS has embraced Donald Triplett the first person to be diagnosed with autism. The dire prediction that only 3 percent of autistic adults will live independently should have us all asking questions and being truly frightened about the future, but it doesn't.


News anchor: "Autism is a common disorder in the United States."

Co-anchor: "Many parents of autistic children are worried about how they will function as adults."

Video covered Donald Triplett from Forest, MS. Donald is elderly, but active. He's articulate. And he's the first person diagnosed with autism in 1943. He's a college graduate. He worked in a bank and has travelled all around the world.

ABC's John Donvan and the book, In a Different Key, were included.

Donvan: "If the rest of us can not care about the differences, maybe even embrace them and honor them, basically honor the shared humanity of all of us, that person can have a fantastic life.

Viewers were told that Donald was institutionalized as a three year old, which was what was done with autistic people in the 1930's, according to FOX6. Donald was only there a year and then taken back home "and surrounded by friends and family."

Donvan: "If we could bottle whatever Forest, Mississippi did, over 80 years plus of Donald's lifetime and export it to other communities, the message of here's how you treat someone with autism, the world will be a better place for everybody."

Reporter: "Currently one in 68 children have autism, and only 3 percent will live independently as adults, according to the National Autistic [sic] Society. Donald defies those odds, which makes him an inspiration to his friends in Forest, especially to parents of special needs children."

Viewers were told that Donald lives in his own house and regularly plays golf at the local country club.

Kim's story of limited services and struggling parents can't be addressed by everyone embracing people with autism. This is a national emergency. This population will take an enormous toll both socially and financially. As long as we continue to pretend that a serious disability is a normal and acceptable part of the human condition, we have no future. Our children are not going to be Donald Tripletts who hold down jobs and manage for themselves.

How is this Mar 3, 2016 news report from Arizona not a crisis? How come no one wants to know why we have nothing for autistic adults if they've always been here?


"In 2014, according to data released by the Centers for Disease Control and Prevention, one in 68 children were diagnosed with autism nationwide, and one in 64 in Arizona. As children with autism grow up, the services available become harder to find. By 2023, there will be about 380,000 adults with autism who will need residential services, predicts the Department of Health and Human Services. According to a study done by the National Autistic Society, 49 percent of adults with autism live with their parents and 70 percent need support services. ...

"People associate autism with children. However, it is a lifelong disability. While there is a myriad of programs to help children with autism, services tend to become less available once the youths grow up....
“Everybody thinks of kids and say, ‘Oh, we want to help kids,’ but kids grow up, and they still need services,” said Tamara Bills, program director for the Tucson Alliance for Autism. “The misconception is they grow up and everybody is ‘Rain Man.’ It’s not like that.

"According to a National Autistic Society study, 92 percent of parents of adults with autism are worried about what will happen in the future, when services aren’t as available."

Anne Dachel, Media


Kim, we are right there with you as our adult son with autism aged out of school several years ago. The need for services will last a lifetime and it is amazing how quickly the years went by and he suddenly became an adult. Good luck to your beautiful daughter in her new day program!

Patience (Eileen Nicole) Simon

Kim, thank you for continuing to reveal autism awareness. When my son's special-ed funding ended, he came to the attention of the police on almost a daily basis, and I took a lot of blame for being a bad mother. I was told I probably would have to quit my job, and stay home to guard the doors.

One time after picking him up from the police station, I went with him straight to the Harvard University Health Service, threw a fit, and demanded that I be hospitalized in a psychiatric facility. I was ushered into a back office to muffle my howling, and within an hour a social worker came in to say they had found a bed for my son in a psychiatric hospital. From there he was soon discharged to a group home, from which he regularly disappeared, and re-appeared in jail somewhere.

How ridiculous the claims that autism has always been here, but just not recognized...

Dan Burns

Folks in the state department of disability services here in Dallas know that the autism epidemic is real. They are in the trenches with us. Maybe in your state too. Take a number, make a friend, and work the system.

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