Easter Seals Living with Autism Study
December 16, 2008 by Kristina Chew, PhD
Filed under Health
Today Easter Seals is unveiling the results of its Living with Autism Study. The study was done in cooperation with the Autism Society of America. 1,652 parents of children who have autism and 917 parents of typically developing children were surveyed about daily life, relationships, independence, education, housing, employment, finances and healthcare. The results are summarized on the Easter Seals blog:
The Easter Seals Living with Autism Study results reveal parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal cconnections, and employment and housing opportunities — and with good reason.
Autism is a growing public health crisis, and families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.
Today’s Chicago Tribune provides more details:
The study by Easter Seals found that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home. Only one-fifth of children 16 and over with autism are employed, compared to 75 percent of people that age without developmental disabilities.
And children with autism under the age of 18 are far less likely than typical children to take advantage of some of the basic tools of modern society, like cell phones, bank accounts and credit cards.
We’ve got to start thinking and doing right now to address these more than pressing concerns: There has to be housing and trained staff and jobs, if autistic adults who need such services are going to have access to them. And we have not only to teach autistic children about using cell phones and ATM cards and managing their bank balance, we have to think that they can and will learn these things.
I really think that a first step is, indeed, believing and knowing that autistic children can learn all those things and that if they’re not, we need to trying different ways of teaching, and learning how they can best learn. Too often I’ve seen my son not learning something (after weeks, months, and years) and every time it’s been because the same old teaching methods were being used, and Charlie was making the mistakes and minimal progress.
Yes, we’ve got a lot of work to do, and what if we start by thinking, it’s not just that a child is not “getting something,” but we’re not “getting” how we can change ourselves and teach them in ways that best suit their ways of learning?
Just what is an Easter Seal? is it some kind of a special forces marine, or a seasonal visiting pinniped as my mind trys to unboggle by the reference?
I see this term “Easter Seal” come up in google alerts, and have no idea because the articles appended never have any appeal to me.
The Story of Easter Seals
Easter Seals has been helping individuals with disabilities and special needs, and their families, live better lives for nearly 90 years. From child development centers to physical rehabilitation and job training for people with disabilities, Easter Seals offers a variety of services to help people with disabilities address life’s challenges and achieve personal goals.
Tragedy Leads to Inspiration
In 1907, Ohio-businessman Edgar Allen lost his son in a streetcar accident. The lack of adequate medical services available to save his son prompted Allen to sell his business and begin a fund-raising campaign to build a hospital in his hometown of Elyria, Ohio. Through this new hospital, Allen was surprised to learn that children with disabilities were often hidden from public view. Inspired by this discovery, in 1919 Allen founded what became known as the National Society for Crippled Children, the first organization of its kind.
The Birth of the Seal
In the spring of 1934, the organization launched its first Easter “seals” campaign to raise money for its services. To show their support, donors placed the seals on envelopes and letters. Cleveland Plain Dealer cartoonist J.H. Donahey designed the first seal. Donahey based the design on a concept of simplicity because those served by the charity asked “simply for the right to live a normal life.”
The lily — a symbol of spring — was officially incorporated as Easter Seals’ logo in 1952 for its association with resurrection and new life and has appeared on each seal since.
Easter Seals Emerges
The overwhelming public support for the Easter “seals” campaign triggered a nationwide expansion of the organization and a swell of grassroots efforts on behalf of people with disabilities. By 1967, the Easter “seal” was so well recognized, the organization formally adopted the name “Easter Seals.”
Easter Seals Today
Easter Seals offers help, hope and answers to more than a million children and adults living with autism and other disabilities or special needs and their families each year. Services and support are provided through a network of more than 550 sites in the U.S. and through Ability First Australia. Each center provides exceptional services that are individualized, innovative, family-focused and tailored to meet specific needs of the particular community served.
Primary Easter Seals services include:
Medical Rehabilitation
Employment & Training
Children’s Services
Adult & Senior Services
Camping & Recreation
Americans With Disabilities Act
Easter Seals also advocates for the passage of legislation to help people with disabilities achieve independence, including the Americans with Disabilities Act (ADA). Passed in 1990, the ADA prohibits discrimination against anyone who has a mental or physical disability, guaranteeing the civil rights of people with disabilities.
At the core of the Easter Seals organization is a common passion for caring, shared by its 23,000 staff members and thousands of volunteers, and by those who support its mission. This heart-felt commitment to helping people with disabilities and their families is what Easter Seals is all about.
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Well regarding Easter Seals—-my grandfather, after he’d had a stroke in the 1970s, had some kind of services provided for by them (I don’t remember which, clearly, as I was 7 and under)—I had an image of Easter symbols and stamps (from the word “seals”) whenever Easter Seals was mentioned—-so hearing about them again has brought back some memories…..
It is good that the study recognizes the effort we put into our autistic children. That effort can only take them so far. The next step has to be medical.
The study can be downloaded via EasterSeals.
Easter Seals sees this study as a call to action. The data from the study confirms what we have heard for years, parents of children with autism do not have confidence that their child will achieve success as they grow into adulthood. There is much to do. Additional services and supports are needed. And you are absolutley right Kristina we need to be using teaching methodologies that result in learning. The true measure of success is the the progress made by an individual with autism.
I’m with you, you don’t know what kids are able to learn if you don’t try. Many of my concerns are reflected in this study.
It’s hard with the economy so bad now. Our state is slashing the budget by 10% across the board for all services. This is trickling down to effect my son, DHHS is claiming his diagnosis of autism is questionable, even though all his physicians/specialists and the school educational team agree he is autistic, and even a nurse within their own department documented he meets the criteria for disability. I am extremely concerned they will deny him services like speech and OT.
I am on the board of a non-profit organization, and our services for adults are being cut more than 10%, and we are already efficient in providing services so they can live independently or in their group homes and hold jobs. There is no fat to be cut. I am so concerned because the day programs may not be able to continue because of the budget cuts, what will our clients do all day? This does not look good for our children in the future.
This study sounds good, looking forward instead of behind. Will have to read more about it later when eyes are more focused. thanks for link to download too.
Easter Seals here pays for incontinent supplies for a child with special needs over the age of 3.
We took advantage of this service and I am thankful it was available to us.
S.
From what I can see in a few casual Google searches,this seems to be a dramatic change in direction for Easter Seals.This focus on autism of theirs seems to be something they have undertaken in the past four or five years.
Better late than never,I guess.While they don’t come out and admit it,you almost get the impression some at Easter Seals, are buying into the garbage about an “epidemic of autism” that started in the last decade or two,and that this is the cause for this change of focus.
At least they have a more realistic outlook than Autism Speaks,in that not only do they offer real services,but direct a fair amount of these towards adults.
I have not asked anybody at ES yet,but I am guessing like a lot of more group homes run by more profit-oriented people,they would do their best to try and find a place for you,if you have both autism,and serious medical problems,and are unable to work.
And yes,a lot of group homes will flat out turn you down for this reason.You are either too much of an insurance risk,or are dead weight,in a work-oriented (read profit oriented) group home.
So two cheers for Easter Seals.They would definitely be the first people I would contact should I need any help.
@Storkdok,
There is no epidemic of autism, so 15 out of 16 of those who were diagnosed autistic really aren’t. The numbers aren’t 1/160. They are 1/2500 like they have always been. Your son is just one of the fifteen who have been “misdiagnosed”.
“And we have not only to teach autistic children about using cell phones and ATM cards and managing their bank balance, we have to think that they can and will learn these things.
I really think that a first step is, indeed, believing and knowing that autistic children can learn all those things and that if they’re not, we need to trying different ways of teaching, and learning how they can best learn.”
Adults, too.
My parents did try going over these things with me, but ultimately with me moving out to college, it was much more important for them to teach me things like to do laundry according to instruciton sheet, rmemebering to eat and shower and such, and so things like a checkingbalance get on the backburner. Unfortunately lost my laundry card which means I xcouldn’tdo laundry until finding someonewho had a card. Ridiculous system that it was impossible to figure out and almost impossible for someoneelse to explain to me, where you can’t pay change to the washing machines and you need a debit card and it takes out a minimum $10 (I lost my earlier card that had about $15 left
somehwere in my room).
I was diagnosed autistic at 2 and am now 33.
The unfortunate thing with most “autism therapies” is that they focus on social skills and behaviour (what is seen on the outside) without addressing the real issues such as hypersensitivity, learning to cope with a different nervous system and a world of people who just don’t get it, relaxation, etc.. ABA and such focus on “training” autistic children to be “normal” without realizing that these skills which are essential to childhood that they are programming in are not flexible and make it very difficult for a child to transition into adulthood. (I underwent ABA as a child so I know first hand how much it didn’t help)
Where I live, there are plenty of ABA programs and residential programs – but it all stops when the person turns 18. The person gets kicked out and that’s the end of it. The local autism society “doesn’t deal with adults”.
So what then? Have you faced this issue?
Here’s why parents should be worried and here’s what I think studies like this should be looking at. Therapies are not addressing everything – they only deal with a fraction of autism. Then people are turfed out at 18 with no training in being an adult and no decent skills on how to live or cope with being autistic in the world. (I won’t even get into how much ABA and IBI cost!) No adult skills are taught and we have many people going into the world with zero adult skills because they have never been taught nor have they been in the right environment to learn. No coping skills have been taught, so that just adds stress and decreases capability for an adult going into the world.
My parents worried about my future too thanks to all the doom and gloom we commonly hear about autism. They were told I’d never be independent and that I should just be locked up in an institution. However, they made the best of it and raised me with the focus of a future and independence, not constant disability like many are raised with. I was taken to the bank at an early age (5 years old) to open an account and learn to use it. I got my first bank card at 16. Our regular school curriculum features a mandatory course called “Career and Life Management” (CALM). This gets into everything from finding apartments, to working, to dating, etc. (I went to regular school) This might be useful. I surprised them by being completely independent.
Perhaps the focus should shift from “learning how to be a nice normal child” to learning how to be an autistic person in the world and how to cope with that and get by anyway. The whole way autistic children are taught should be changed too, in my opinion. People can’t learn under stress and when needs are ignored, one cannot learn.
There will always be worries since every autistic person is different and has differing levels of ability. Not everyone can do the same things. Some have problems with cooking/eating, others have trouble with money. I know I have problems with being overwhelmed with household things and budgets. I think it also needs to be realized that autism is not just one category – there are many variations between people. One size does not fit all. One therapy does not always work for everyone. One service does not always work for all.
With appropriate services and support for *adults*, I think parents might have a little less to worry about and may take some of the stress of of themselves and their children. (Again, people under stress cannot learn)
Adult services is something that is seriously lacking all over the world. Many autistics have been saying that for years but no one is listening to us. They keep doing studies like this with parents and non-autistic people.
How do they know what we’re capable of? How do they know what we need? My parents had know idea that I’d do what I have and they still to this day have no idea what I need or how it is for me.
Why not include autistics in this study as well as parents? After all, we’re the ones who are going to have to “live” with whatever results you get and our non-autistic parents don’t always understand exactly what it’s like for us or exactly what we need?
Just my thoughts…