The Grim Future for the Avalanche of Autistic Adults

Managing Editor's Note:  Jan Randall is a tireless advocate for people with autism. She lives in Massachusetts, which happens to have fairly good services. And yet, there's still very little for her adult son with autism. How is a parent of an adult with autism supposed to earn a living outside of the home, when their child needs assistance? How do we prevent aging parents from burning out completely? The link to the article is HERE.

All grown up — now where to go?

Autistic kids are quickly turning into autistic adults, and the growing population is straining social services and posing new challenges for parents who have to arrange care for them 24/7.

By Jim McGaw

SEEKONK — Andrew Randall swishes the swirls his paint brush around a canvas set up on the kitchen table. Heavy globs of golds, greens and whites blend into a dark, monochromatic work that may end up on his family’s wall — maybe even a gallery. Andrew stays busy as his large frame hunches over the canvas; his arms move quickly and his gaze is rarely diverted.

Working equally as hard is his mom, Jan, who calls herself Andrew’s “apprentice.” Ms. Randall is busy opening new jars of paint, cleaning up drips that have formed at the edge of the canvas and making sure Andrew’s clothes stay reasonably clean. Occasionally, she has to chase her son down when he tries to leave the room, wet brush still in hand.
“More white in green,” says Andrew, as his mom mixes some paint. After about an hour of painting, Andrew stops.

“I’m all done with the canvas. Get out of the canvas,” he says.

Andrew’s 23 and has classic autism, the most severe form of the developmental disability which is characterized by impairments in social interaction, communication and a pattern of repetitive, stereotypic activities. Because of his limited language skills, he needs constant attention. Even a seemingly solitary hobby like painting, one of his favorite diversions, is something he can’t do alone.

“That’s kind of the bummer about this. I have to be available whenever he paints,” said Ms. Randall, of Seekonk.

Andrew is just one of many people with autism who has aged out of the support programs he was entitled to as a child. Although he’s fortunate to be in a day program for people with disabilities — many adults with autism are on long waiting lists — the services Andrew receives now are not as structured or stimulating as was his school experience, said Ms. Randall. Like many parents of adult children with disabilities, she’s worried about her child’s future.

A parent resource specialist for Community Autism Resources, a nonprofit that provides services and support to over 1,800 Southeastern Massachusetts families touched by autism, Ms. Randall said the growing number of older autistic children have unique challenges which aren’t being addressed.

“I feel there is very little knowledge and understanding (about) autism in adults and the impact on them and their families,” said Ms. Randall, noting that one in 150 children today are being diagnosed with autism. “The numbers are going up; there’s going to be a flood of kids (who are) are going to become adults. What are we going to do?”

Joanne G. Quinn, executive director of The Autism Project of Rhode Island, said many parents of older autistic children have the same concerns. “There are more challenges. The volume of kids are aging up and it’s a whole new thing,” said Ms. Quinn, adding that support systems are not “built in” like they are in schools. “Once they got out of the school system, what is there for them?”

The slow economy is only making things worse for parents seeking services for their disabled children, she said. “Medicaid, which covers a lot of kids up to the age of 18, is in a very tenuous position,” said Ms. Quinn. “Autism is very expensive. Even middle-class parents are bankrupt.”

Warning signs early on

The Randall family’s journey into the world of autism began about two decades ago. Ms. Randall said things seemed normal when Andrew was an infant. He had met all his early milestones, such as taking a bottle, walking and talking. By the time he was 20 months old, however, his parents noticed that many of his skills were regressing. The doctors “pooh-poohed” their concerns, according to Ms. Randall, and Andrew didn’t receive an official diagnosis of autism until age 4.

“He missed out on a lot of early therapy which could have really benefited him,” Ms. Randall said, who believes an earlier MMR vaccine — an immunization against measles, mumps and rubella — was the cause of Andrew’s condition.

(Many parents of autistic children believe Thimerosal, a mercury-based preservative in children’s vaccines, is the cause for the increased number of autism diagnoses in recent years. Although some scientists and doctors have supported this theory, it remains a controversial topic.)

Andrew’s language is very idiosyncratic, his mom said. “He uses a lot of delayed echolalia — using chunks of phrases that he’s learned and plugging them into places. If he thought someone was angry at him, he’d say, ‘We’d fight all night,’ which is from ‘Hop on Pop,’” she said.

Andrew attended a number of different schools, starting as a preschooler with South Coast Educational Collaborative (SCEC). He had partial inclusion in the public schools in first and second grades and also attended Groden Center in Providence. Andrew went back to SCEC and attended its Bridge Program until he turned 22, when he entered adult services.
“It was a whole new set of challenges,” said Ms. Randall, adding that while autistic people have impaired social skills, that doesn’t necessarily mean they don’t want to interact with others.

“The loneliness factor is huge,” she said. “He doesn’t really have any friends who call him and ask him, ‘Hey, do you want to grab a bite to eat?’ The only people they have in their lives who can do things with them are people who are paid to be there.”

One of them is Carrie Sandman, whose visits are funded through the Massachusetts Department of Mental Retardation. “I see him three days a week and we usually hang out for three to hours each,” said Ms. Sandman, who lives in Westport. “He loves to go to the driving range and hit golf balls. We go play basketball, we go to indoor mini-golf or we go to the game room and play pinball.”

Sometimes they stay home and paint, which is right up Ms. Sandman’s alley since she’s studying art therapy in college. Communicating verbally with Andrew isn’t always easy, she said, but they know how to connect in other ways.

“At this point we’re just such good friends. We know each other on a deeper level. I’ve learned his language and he’s learned mine,” said Ms. Sandman. “He’s awesome.”
Sometimes, Andrew doesn’t know what to do with himself when Ms. Sandman’s not around, his mom said. “It’s tough on those days when Carrie’s not available,” said Ms. Randall, adding that Carrie’s like a “big sister” to Andrew.

Andrew’s real sister, Allison, attends college. Because of Andrew’s language difficulties, it’s almost like she’s an only child, said Ms. Randall. “Not that she and Andrew don’t absolutely adore one another, but she doesn’t have anyone to share her concerns with,” she said.

Challenges for families

Now that he’s out of school, Andrew attends an adult day program through Community Connections, a nonprofit which offers services to disabled people in Southeastern Massachusetts. However, he spends fewer hours per week in the program than he did in school.

“More hours for me,” said Ms. Randall, who’s constantly arranging for people to be with Andrew and seeking activities to keep him busy. “Families are struggling through the day, trying to get through therapies, trying to find recreational activities. Social skills groups are outrageously expensive.”

Caring for an adult child with autism is a full-time job in itself, and that means Ms. Randall and her husband — ages 50 and 48, respectively — have little time for themselves. One of their own diversions is a softball league they joined shortly after Andrew’s diagnosis.
“That’s sort of our sanity. That’s the one place we can really relax and have some fun,” said Ms. Randall.

However, it’s also a constant reminder of what they’re missing out on, as other friends in the league have children without disabilities who are older or have gone on to college. “They have their lives back. They can take off to a movie. We can’t,” said Ms. Randall. “We joke that it takes an act of Congress just for the two of us to go down to Applebees. Everything has to be planned way in advance. The adults get lost completely because the focus is all on the kids.”

Ms. Quinn said the disorder can put an enormous strain on families. “It is hard. Autism is chaotic. We have to pre-think and pre-plan every step of their day,” said Ms. Quinn. “I have a friend who uses two baby-sitters at the same time.”

More support needed

Through Community Connections, Andrew volunteers about four hours each week. Last week he was helping out at Church of Our Savior in Somerset, stacking chairs on tables and cleaning up outside.

While she’s happy Andrew gets out into the community, Ms. Randall said there’s so much more that he could be doing.

She believes Andrew could work up to 20 hours a week, perhaps stocking shelves in a store. “He’s never had a paying job. He could work with a group of three to four other (autistic) adults with a support staff, but there’s no funding,” she said.

Ms. Randall said her hope is that one day, Andrew will get the support he needs to become a more productive member of society.

“People with disabilities are often seen by the general public as takers,” said Ms. Randall, pointing to Medicaid and day programs as examples. “I don’t want him to be seen that way. I want him to be seen as someone who gives back to his community.”

For more about Andrew Randall and his paintings, visit www.rubbersuitstudios.com/andy_randall.htm.

Comments

[Willie]

We all, as parents of Autistic children fear the scenario described above. You cannot help but be worried and afraid for your autistic child. Normal children are worry enough compromised children become a fulltime job. Please do not be foolish enough to believe that this government or any government in the future is going to help you socially, economically or medically with your child or children. This simply will not happen unless you beat it out of them with legal cases against the government that has demanded that your child be vaccinated. This requires courage and money and there are shortages of both.
As a physician I agree with the parent above that recommends scrapping the entire vaccine schedule as it is completely unscientific and worthless and we should just stop participating. The problem is at some point this will come to a legal head with parents, children and vaccinations. Please understand in my opinion the vaccines are given to sell more vaccines to raise money for AIDS research and a possible AIDS vaccine and really has nothing to do with the safety of the child or with any regard for the child’s health or well being. As many of the vaccines do not have a lasting benefit the risk is clearly far greater than the benefit. This lends itself to my hypothesis stated above. I realize that many of you abhor the whole conspiracy ideation and the accompanying baggage however you should read the work of Liam Scheff and the House that AIDS built and no matter how naïve you are you will get the gist of what is at stake and how truly nefarious these people are.

[Cheryl Gaudino]

You are an inspiration to all, my friend. Andrew (& Bob!) are lucky to have you. I know how hard you've worked, the b.s. that you've had to endure to get services for Andrew. I see Ryan at 12 and know that 22 is closer than I can imagine. It's absolutely frightening to think of his future when I'm gone.

[Stagmom for Jan]

Hi, Jan. Kim Stagliano here - not sure if you remember me from Mass. You were so helpful to me. I think we all have that snapshot inside our homes. Thank GOD for shades! :)

KIM

[Jan]

I'm Jan, Mom to Andrew in the story. I just wanted to say thank you for sharing this. I think that the challenges that parents of Adults with Autism, and their wonderful sons and daughters are facing are woefully under-reported.
I wonder, will we (the government and the community at large) wait until it's a disaster like we did as the numbers of kids with Autism steadily increased?
I also have to say that the picture you chose was completely appropriate! Are you sure you haven't been peeking in my windows?

[Kathy Blanco]

I have a boy 27 with autism and a girl 21 with autism. Two girls inbetween them who are married and have their own lives. I have never been able to work, ever. My priorities have always been my children, however, I find when I get older, I question how long I can go, without this taking a toll on my health (it already has), our financnes (it already has), etc. My husband may have a good job now, but when he is older, will he be able to support us? Sure, we get adult services, the SSI, yet my kids, one of them at least has seizures and doesn't fit into any of the day programs etc. So, I am left to take care of him, and soon my daughter when schools runs out. I don't mind it really, because I love them, and I want to serve them...but like I say...what if I don't last? Then, I think of my two daughters, with lives of their own...will they have to take up the slack? Probably, and I dread it. They lived with autism enough, they don't want more, nore need more of it? And when they are old, who will finally take care of my kids? The system? PLUEEZ. The system is not safe, the housing is horrid, the care is minimal if not underestimating the numbers coming into the next few years, and this is why we have homeless sick persons on the strest, who probably also have an autism diagnosis, sleeping under a bridge for warmth and comfort. I dread this world, and how it has become. I dread that we are low on the totem pole of concern, and I dread a world of this many autistic children who are going to be adults with HIGH NEEDS, meaning, not just care 24/7, but also FINANCIAL. When is our government going to wake up, and stop this nonsense? This is a national security issue.

We often hear how autism is not degenerative...I beg to differ. Talks with Dr Walsh along with my findings show an entirely different picture. If the child was not given biomedical supports, the brain degenerates, and often goes with schizoid/panic problems, cancers, heart attacks, and seizures. (see what kids die of from autism when they get older at brain banks). Wandering, like Alzheimers will increase, and drownings...because no one is there to take proper care of them. If not a police officer killing them because they don't recognize dangers?

If the parents never had the financial means to give biomedical support, ABA and all the like, it is likely the brain of a true autistic child, who becomes an adult, will be a handfull for any "residential" setting. Why don't we get insurance to pay for this mess? Because they know how much it costs too. They aren't stupid.

In my estimation, the only way to stop this trend is to
1. Completely stop the vaccine program and study it (truthfully and honestly)
2. Birth our babies outside of hospitals, which routinely asphyxiating children into autism via immediate cord clamping/birth drugs and 6 hours after HEP B's.
3. Clean up our toxic world, no fluoride, no BPA, no DDT, no mercury, no lead, no heavy metal anything (good luck with that)...
4. Completely revamp our foods, no HFCS's, no MSG, etc. All organic.
5. Test parents for lyme diseases, myucoplasma, viruses, heavy metal burden BEFORE PREGNANCY. Even check for thyroid diseases in mothers. Treat.

THEN, and only then, will this all come to a halt.
Since, that won't happen, it behooves us as future parents, and parents now, to make sure the next generation does not participate in the medical programs so called or proclaimed as safe. Including the use of antipyretics (fever reducers) during vaccine fevers (causes autism too folks).

The point being, I don't think we even have a handle on what is going to happen. The mutlisystemic nature of this "disease" is so numerous and wide, that our medical system would and will begin to feel the heat. How many times this year did I end up at ER this year, and times in the hospital with my son? At least ten. That's five thousand dollars a pop folks! If I didn't have GREAT medical insurance, through my husband, and the STATE, where would I be? I would be financially ruined!

So, I agree, let's bailout the autism families. Let's give all of us now a million dollars each for compensation for the vaccine injury, and let us decide how we can vest it in our children! Look...it's going to cost the government that anyways????? Might as well pony up now...before everything, I mean everything crashes, families with autism, families with DOWNS, families with long term care problems, families with ALZ, and the like...we all need help...

[Amy Yother]

For now, the mom in the article can take care of her son's needs........I too take care of my 18 year old son with Asbergers/other disabilities. What happens when she and I are gone ? What happens when our loved ones family, advocates and supporters are no longer here ???? Our loved ones need and deserve affordable self contained communites where adults with all levels of austim can live, work, play, worship - they deserve a safe community - with support and supervision - not an apartment complex here and there surrounded by a run down and dangerous neighborhood, which is where a lot of our disabled end up living in deplorable conditions. The word "inclusion" is pushed on us......It can't and does not work with a lot of people with disabilities....I won't get into the miserable life my son has had all these years in schools because of "inclusion". Yes, there are private communites - but they cost a fortune which most people I know cannot afford. Imagine if something happened to you today........what would happen to your loved one ? My heart breaks everytime I think of it, which is most of the time. Society will have to deal with this very real situation and fast.

[karenatlanta]

Recently, a friend applied in tandem with her special needs son for a part time job.
They both got hired and Mom will support son at work.
The few companies like Walgreens and Kroger that intentionally hire special needs adults should be recognized and applauded.

As our generation of children born in the 90s and 2000's grow up (short of a miracle) there will be less paid state help. The volume of kids will just be too big to send out personal aids.
We need to think creatively now!
It would behoove parents to consider starting businesses that make room for supported work.
Building apartments over the garage and in-law suites, because it is unclear how society will absorb 1:150 and still function.
As it stands, the group home list in our state spans decades before approval. Thousands await placement.
I am not aware of anyone in my area, lucky enough to have a "big sister" aid or even a day center.
Quite the contrary, the few kids I know aging out of school are in limbo with frustrated parents.
I get the nervous feeling that what the future holds for my special needs son, rests in my hands.
The stats on being ADHD and unemployable are bad enough, what will the future have for a child with Autism????

[Allie90]

If EVERY able adult in this country could donate ONE day out of the year to helping someone with special needs...

Just one day of your life. Needs would be taken care of for the most needy.
Simple Acts of Love.

[Nicole Bryant]

This article really breaks my heart and has me very concerned for the future for our children. My son's one of the "lucky" ones, he "only" has Aspergers as I've been told, but he's still going to need support into his early adulthood. Where will it come from? It's so sad, we have no where near the services available toour children that they really need and now in our economical crisis there will be even less available.

[Twyla]

What a contrast between this vivid description of a struggling family, and the casual comments from those who say that autism has always been as common as it is now, but just unrecognized because of underdiagnosis. Adults such as this man cannot go through life unnoticed. There's just no way that we have 1 in 150 adults with autism out there, and as the current teens with autism grow out of their school programs, this will become more and more obvious.

What a sad and moving story. Thanks for posting it.

[jen]

don't worry guys, my husband just said they'll probably come up with a vaccine to cure autism. HAHAHA. Seriously though, we can't drive home the economics of this problem enough to the public in general, pediatricians, politicians. Sadly,that might be about all they will respond to. Hey, they're talking about the auto industry being more accountable, responsible for getting bailed out and just maybe it's timely for accountability to be topical in the health field.

[Anne Dachel]

It's my hope that when this country finally realizes the disastrous cost of caring for a generation of disabled adults with autism, they will hold accountable all the officials and medical people who denied an increase in autism.

Autism represents a bill we simply cannot afford. A Harvard study says one person with autism will cost $3.2 million for lifetime care. Others say the price tag will be much higher.

Either way, autism will cost everyone.

Anne Dachel
Media editor

[Tanners Dad]

Very good article. I cried as I thought about the lack of services that we have in Illinois. I pray that the new president realizes we need more than lip service. Schools in Chicago do not help those downstate.

I found this short PSA Video a few weeeks ago. It recaps the life of an idividual with Autism. It wakes you up and pulls on your heart strings. This is what I posted with it...

The most beautiful child becomes an adult. Pay now or pay later. Pay for Autism recovery now!

The bailout for the Children with Autism who grow into adults that did not get proper treatment will run into the trillions of Dollars

http://www.causecast.org/member/tanners-dad/videos/3131