Autism Speaks and Housing: Organization’s Housing Survey Results Released

Thursday, December 5th, 2013

Autism Speaks is an organization that is dedicated to Autism Spectrum Disorder (ASD) research and activism. Founded by the grandparents of a young boy with ASD, the organization has grown into the world’s leading autism science and advocacy organization. Recently, the organization has focused their considerable attention on an issue that is very close to the hearts of the staff of M&L Special Needs Planning – housing for individuals with special needs.

With the help of SIS International Research, the organization designed and distributed a survey with the intention of capturing the current and future housing needs of individuals with ASD and their families/caregivers. The survey, titled The National Housing and Residential Supports Survey, is described by Autism Speaks as “a snapshot of the current housing and support needs of the rapidly growing number of young adults and adults with autism.[i

This survey sheds light on a issue that is (and should be) of growing concern to individuals with ASD; current statistics project that 500,000 individuals with ASD will age into adulthood over the course of the next decade. Considering the already strained services that exist for individuals with ASD – and not just relating to the special needs housing crisis, but across the board – families of children on the spectrum should be aware of the lack of housing and independent living services that will be available once their child reaches adulthood. In short, families should prepare now for the needs of their child in the future.

Here at M&L Special Needs Planning, we are very familiar with the special needs housing crisis – not just for individuals with ASD, but for all individuals with special needs. We also really, really love to talk about this crisis – we feel that by tackling these issues head on we can begin to discuss, analyze, and shed light and attention on them. We feel this is the best chance to enact change and arrive at solutions. So, for this reason, we are very happy to share with our readers the results of Autism Speaks National Housing and Residential Supports Survey.

Autism Speaks National Housing Survey: Results

According to Autism Speaks, the National Housing Survey was designed to “measure and define the physical housing needs, as well as the types of support services needed by young adults and adults with ASD so that they may live as independently as possible.[ii]” The survey contained questions that focused on the current state of housing and opportunities for individuals with Autism, as well as the future housing and support needs of this population. It was primarily intended to give individuals with ASD and their caregivers a voice; the surveyors wanted to hear directly from the ASD community.

The survey was distributed through email, social media, the offices of Autism Speaks, and through cooperation with the organization’s partners. The organization received more than 10,000 responses, with close to 400 of those responses coming from from individuals on the spectrum.

The results of the survey – which were divided into two categories, Caregiver and Individuals with ASD – point to an overarching theme that many individuals involved in special needs housing and supports are aware: there is a clear and significant need for more housing and residential support options for the ASH community.

Caregiver Results

According to the Caregiver Survey results, the average age of the individuals being cared for was 17 years. 58% of respondents cared for someone under the age of 18, and only 4% reported caring for someone over the age of 30. The majority of the individuals be cared for resided at home with their families – perhaps as a result of this, one of the main themes that emerged from this portion of the survey was the overwhelming assertion that caring for an individual with ASD is primarily a full time job. 35% of caregiver responses reported that the individual they care for required 24-hour support, and 78% said that the individual being cared for required some daily support.

The majority of caregivers expressed the ideal housing situation for the individual being cared for as a single-family home in a suburban community. The intentional community came in at a close second. Most of the respondents indicated that the individual should live in close proximity to the family home; 8 in 10 would like for the individual to live within an hours drive, with more than half indicating that they would like for the individual to live with 15 minutes of themselves.

Respondents expressed a number of concerns that they had regarding the individuals with ASD and independent living; the number one worry was related to their concern that the individual be treated with care and respect, followed by worries related to paying for the home and the support services.  Other concerns identified include a worry that independent housing would lead to a lack of continued support for the individual with ASD from caregivers and family members, and safety issues regarding the individual living independently.

Individuals with ASD Results

The median age of individuals with ASD who responded to the survey was 25, with the majority of these individuals (60%) living at home with their families. Fewer than 20% of respondents lived independently.

In response to questions regarding the level of support these individuals felt they required, 38% of respondents indicated that they required less that a few hours per week with 8% indicating that they needed 24 hour support and 8% indicating that they needed some support throughout the day.

The preferred type of living arrangement was identified as living with a roommate in an independent home – 58% of respondents chose this option. 37% indicated that living solo in an independent home was their preferred living option. The Individuals with ASD echoed the caregivers in their preference for a single-family suburban home as the ideal housing option; the townhouse and then apartment (with no common space) came in as the second and third most popular options. The planned/intentional community was the least popular choice. The majority of respondents did want to live close to their caregivers/families, with 28% within 15 minutes and 23% within an hour.

The top concerns expressed by respondents when looking for independent housing are primarily financially related; the number one concern is paying for the home. The second concern related to fear of social interaction, with the third concern related to setting up and maintaining supports. Other concerns identified included not having continued care from family/caregivers, being treated with care and respect, and paying for support services.

Overall Conclusions

In addition to the main theme of the survey, which was revealed to be a need for more housing and supports for the ASD community, the findings illustrated that an alarmingly low number of respondents– 76% – reported that the individuals being cared for isn’t on a list to receive any supports. In addition to this, only  one in 4 of the respondents report saving for the future housing needs of these individuals. Autism Speaks has interpreted these results to mean that more education and awareness is needed to help parents prepare for the time when their individual with ASD will need independent living and housing options. The organization also calls for increased transparency in the system that serves these individuals.

Need More Information?

We hope that our discussion of this survey sheds some light on the current and future housing and support needs for individuals with ASD. We feel that it certainly proves the point that we try to consistently make – there aren’t enough housing opportunities to go around! If you would like more information, please visit the Autism Speaks website, or click this link to read the survey results in full.

Please feel free to contact us with any questions or concerns you may have; we are experts in the field and can help you with your search for special needs housing, or with any of the items on your special needs planning to-do list. As well, please check out our Independent Living Program and Housing Project database – this online resource contains information on independent living programs and housing options, as well as housing information, from across the United States.

Thanks so much for dropping by today! See you all next week!



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