Easter Seals' LIVING WITH AUTISM STUDY findings

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Easter Seals' Study Sheds New Light on Parents' Life-Long Fears,

Anxieties and Critical Supports Needed to Raise a Child with Autism

http://www.easterseals.com/site/PageServer?pagename=ntl_pr_autism_study

With autism, parents have extreme concerns about future independence, finances

and isolation, compared to more common worries of parents with typically

developing children

(Washington, December 16, 2008) -- Parents of children with autism are

struggling with a host of worries that impact every aspect of their lives, and

are particularly fearful that their family will lack the life-long supports

needed to address the significant challenges of autism, according to a new study

released today by Easter Seals and made possible by MassMutual Financial Group.

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 connections, and employment and

housing opportunities -- and with good reason.

Autism is a growing public health crisis, with millions of families 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.

" The study quantifies what we've heard anecdotally over the years, " says

, Ph.D., MPH, Easter Seals national director, autism services.

" The one consistent message Easter Seals hears from the families we serve --

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. "

Study Shows Parents' Hope for Independence . . . Financial and Otherwise

The nationwide study provides new insight into the ongoing challenges facing

individuals and families living with autism, particularly their concerns about

the future. It's unique in that it closely considers and quantifies the very

real concerns of parents of children with autism in relation to parents of

typically developing children.

A sampling of the findings:

a.. Parents of children living with autism are very concerned about their

children fitting into society, with very few feeling their children will be able

to:

a.. Make his or her own life decisions (14% compared to 65% of parents with

typically developing children)

b.. Have friends in the community (17% compared to 57% of typical parents)

c.. Have a spouse or life partner (9% compared to 51% of typical parents)

d.. Be valued by their community (18% compared to 50% of typical parents)

e.. Participate in recreational activities (20% compared to 50% of typical

parents)

b.. Children with autism also are less likely than their typically developing

peers to have bank accounts (37% vs. 55%) and use electronic products like cell

phones (9% vs. 41%) or MP3 players (23% vs. 49%) -- all tools of mainstream

society.

c.. Many parents of children with autism report they're " financially

drowning, " with concerns for their children's financial independence seeming to

far surpass the worries of typical parents. Seventy-four percent of parents of

children with autism fear their children will not have enough financial support

after they die, while only 18% of typical parents share this fear.

They also express extreme financial strains and costs associated with caring

for a child with autism, with more than half stating that the cost of caring for

my child:

a.. Drains my family's current financial resources (52% compared to 13% of

typical parents)

b.. Will drain my family's future finances (50% compared to 10% of typical

parents)

c.. Will cause me to fall short of cash during retirement (54% compared to

13% of typical parents)

d.. Key to adult independence is employment, yet only 24% of teenagers with

autism have looked for a job, compared to 77% of their typically developing

peers. And 76% of parents of children with autism are concerned about their

child's future employment, when only 35% of typical parents share this fear.

" Families living with autism face so many challenges on a daily basis, " says

Chandler, senior vice president and chief marketing officer of MassMutual's

U.S. Insurance Group. " But this study has really brought home for us how much

stress they face when it comes to their current financial situation, the future

of their child with autism, their other children and their own retirement. Our

hundreds of Special Care Planners across the country are in a great position to

help make at least this part of their struggle easier. "

As an Easter Seals corporate partner and the study sponsor, MassMutual is

committed to serving people living with autism and other disabilities through

its exclusive SpecialCareSM program, an innovative solution that gives families

with individuals with special needs access to information, specialists, and

financial strategies that can help improve their quality of life.

Easter Seals worked with Interactive, and in cooperation with the Autism

Society of America, to conduct the Living with Autism Study and survey 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.*

Study Findings to Drive Solutions

" Easter Seals strives to make data-based-decisions, " says. " 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. "

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.

" For parents of kids with autism, there are no simple answers, " adds .

" 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. "

*Methodology

This Easter Seals' Living with Autism Study was conducted online within the

United States by Interactive on behalf of Easter Seals between June 16

and July 17, 2008 among 1,652 parents of children age 30 and under who have

autism and 917 parents of typically developing children age 30 and under. No

estimates of theoretical sampling error can be calculated; a full methodology is

available.