Living with Autism Study reveals parents’ fears for their children with autism

The one consistent message Easter Seals hears from families — after the initial apprehension and anxiety of learning their child has autism – is an overwhelming concern about the life-long supports their child with autism may need to be independent.

Until today, we have had no data to quantify what we’ve heard anecdotally over the years. So Easter Seals worked with Harris Interactive, and in cooperation with the Autism Society of America, to conduct the Easter Seals Living with Autism Study. The study, made possible through the generous support of Easter Seals corporate partner MassMutual Financial Group, surveyed 1,652 parents of children who have autism and 917 parents of typically developing children about daily life, relationships, independence, education, housing, employment, finances and healthcare.

I just now sat down after participating in a national press conference at the National Press Club in Washington, D.C., to announce the results. The press conference was hosted by James E. Williams, Jr., President and Chief Executive Officer, Easter Seals, Inc., who presented the key findings along with me.

We were joined at the podium by John Chandler, Chief Marketing Officer, MassMutual Financial Group ; Lee Grossman, Chief Executive Officer, Autism Society of America; and Maurice and William Snell and Barbara and Scott Gaither, who represent Easter Seals families.

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.

Easter Seals will use the study results to raise awareness of and advocate for the life-long services millions of families living with autism desperately need — including school to work transitions, employment support, residential and community support, and financial planning.

Easter Seals strives to make data-based-decisions, and with this study, the disparities that parents of typically developing children and parents of children with autism experience can now be shared via solid numbers.

For parents of kids with autism, there are no simple answers. There is an urgent need for increased funding and services — especially for adults with autism. Easter Seals wants to help change all of this and make a difference for families living with autism today.

Download the Easter Seals Living with Autism Study results and key findings.


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  1. Allison M. Kramer Says:

    Hello. My name is Allison M. Kramer and I started a self-advocacy channel @ You Tube last spring. I am 29 and have AS. I realized I had to do more for myself and get the word out about adult autism and help others in my situation in the process. I was pleased to find this article in my ASA e-newsletter. Adults w/ASD have the fewest resources and get the least recognition. My mom will be 70 in February. I am totally dependent on her for my care. I live in mortal fear of being institutionalized if there is no housing available for those with autism. We need to work and give back to the community as well. I have sensory issues that exclude me from much of society. My biggest untreated sensory problem is severe hyperacusis. Nothing in my county gets funded. We took out a loan before things got really bad to cover the complete cost of a sensory integration treatment called Tinnitus Retraining Therapy. Autism insurance just got covered in Illinois, but only because of a political game and does me no good as I am 8 years past the age of eligibility for coverage. My mom is retired and on SSI and I’m on SSDI. I see a psychologist once a week 1 hour away as there is nothing any good in my area. I have to meet in the back board room as the regular part of the building is too noisy. I am fortunate to have their service as they no longer take out-of-county patients. The severity of my case is why they kept me. Other than the weekly visits, my life is my house-no windows open. I eat, watch TV, exercise, work/play on my PC, spend time w/my mother and listen to books on CD (as reading is hard for me to do for any length of time). I want more in my life. I am willing to work (and am working) for more, but I need help. My psychologist needs help to help me in the way of resources. My mother needs help, too. Parenthood is a job that one doesn’t retire from, esp. when caring for a special needs-child, and I am the special-needs child of my mother. Thank you for allowing me to share my opinions and suggestions.
    Allison M. Kramer
    Adult Autism Awareness

  2. Easter Seals Living with Autism Study Says:

    […] 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 […]

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