For the past four years, I worked for 801 East Shelter/Transitional Rehabilitation Program in many roles and completed more than 500 intake interviews/screenings. I observed a majority of those individuals had co-occurring disabilities, i.e., substance abuse and mental health issues. Having interned for Madison House Autism Foundation, I have looked back to those intake sessions and think differently about autism and homelessness:
1. Front-line emergency shelter staff may misconstrue autism as a mental illness.
One-third of the total homeless population is believed to have untreated serious mental health challenges (Office of Public and Research Affairs, 2016). According to the 2015 Housing and Urban Development survey 24% (104,083) of the total 436,921 adult homeless population were reported to have severe mental illness. Emergency shelters and transitional housing are designed to provide temporary harbor for people experiencing homelessness. Afterwards, the goal is to transfer them into permanent housing or rapid re-housing settings.
Front-line staff, including security officers, intake specialists, shelter monitors, case aids, and case managers may infer that a homeless person in crisis may only have a mental illness and not a developmental disability. Adding to the confusion is past medical professionals diagnosing children with childhood schizophrenia when today, they may likely be diagnosed as autistic. Now, when these adults are asked if they have ever been diagnosed with disability, they may respond with schizophrenia when they actually are on the autism spectrum.
Often, the results are less than optimal support, accommodations, and responses because of the lack of staff training about autism and their misappropriation of diagnosis.
2. Front-line emergency shelter staff do not have adequate autism identification and sensitivity training.
From my experience, it was not uncommon to see front-line shelter staff treat people on the autism spectrum like clients with mental health challenges instead of clients with neurological/neurodevelopmental disorder. The staff was unaware how to best identify and support autistic clients through the intake process. I never received any autism-specific training while working as intake person, just general training that focused on mental health challenges. Some of the trainings that I completed include:
- Rights under the American with Disabilities Act/Reasonable Accommodation,
- Customer Service & Language Access,
- Understanding Special Needs, and
- Characteristics of Populations served.
These trainings highlight the individual’s rights and access to information, but do not include the accommodations for ‘invisible’ disabilities common to people with autism, i.e., social skill challenges, sensory overload, support to prevent meltdowns, etc.
To access a bed in the shelter, all shelter residents (autistic adults included) must go through a processes which involves filling out a text application, going through a verbal intake (if new to the shelter), linen/bedsheets reception, and bed assignment. Shelters admit residents on a first-come, first-served basis. These processes can be challenging for someone on the autism spectrum for the following reasons:
- Residents are supposed to line up before the shelter opens, and this is where security officers are in charge of maintaining order and safety. Residents can not move from their place if it’s too loud, smelly or scary because they risk losing their spot. What if this causes a meltdown? How would the security officers react?
- Residents must also get searched by security officers and have their bodies patted down. Many people on the spectrum are sensitive to a loved one’s touch, let alone a security officer who may touch them in ways that are hard to endure.
- Their belongings are taken from them and must be passed through security metal detectors. Some individuals on the spectrum hold items that may seem odd as an object of security, stability or comfort. They may not be willing to let go of those belongings and shelter staff will label these individuals non-compliant.
- Shelter monitors may issue instructions one after the other to autistic adults. This barrage of verbal commands may be too much to process and cause the person the spectrum to shut down or flee. The same reaction could occur when handed a form to fill out as reading, writing or answering text-based questions can sometimes be challenging.
3. Demonstrating disability or self-advocating may be difficult for homeless autistic people in emergency shelters.
After homeless individuals go through front-line intake process, they must request to get additional help. The 801 East Emergency Shelter is a low-barrier shelter program, open to anyone, and offers dinner, access to management staff, showers and a bed on a nightly basis. Of the more than 400 beds, the program mostly provides shelter to people with disabilities. Typically, residents must seek help and disclose their disabilities to access additional services. Individuals can not stay in the shelter during the day unless they are in a “work-bed” program. Thus, caseworkers typically spend their time with working clients while other residents leave the shelter for the day.
Some researchers contend that homelessness could be correlated with loss of employment, low level of educational achievement, economic factors, poor health and inability to access needed services, poverty and social exclusion, structural, personal and political factors. These are all factors that people on the autism spectrum or who have other intellectual developmental disability (I/DD) experience due to their impairment or being disabled by society. They may not know how to self-advocate or understand that they may be able to access additional services by disclosing their disability.
Use of autism screening tool at intake might help guide the person to autism-specific resources and strategies. It could also lead to a formal assessment for diagnosis on the autism spectrum and expand options for transition to services beyond the shelter. For instance, front-line staff could use this fast and easy social challenges screening questionnaire or the longer Aspie Quiz.
4.Connecting shelter residents on the autism spectrum to additional services and supports may allow these individuals to leave the shelter system
Often, homeless people could be invisible and ignored on the streets unless they are linked with social service providers. Going through the intake process at a homeless shelter may be a barrier to access for many autistic adults, but for those who make it through the process and are identified as being on the autism spectrum, can they obtain the help they need?
Case managers are often available on-site to help the residents and refer eligible clients to social service providers. Case managers have had Supplemental Security Income (SSI)/Social Security Disability Insurance (SSDI) Outreach, Access, Recovery (SOAR) training to refer and link eligible clients to nearby Social Security Administration office. However, these managers may be unfamiliar with access to services through the state’s developmental disability agency if their experience is primarily in the mental health field.
A customized intake tool-kit and well-trained staff who could communicate well with people on the spectrum could greatly assist homeless autistic adults to find affordable housing and support services to better integrate and thrive in their community.
5. There is no data collection on homeless autistic adults in emergency shelters.
It is impossible to tell the exact number of the autistic homeless population residing in emergency shelters or sleeping on the streets. “Point in Time” is the most critical census tool employed in shelters and transitional housing. On a single night in January, volunteers walk sections of a neighborhood or city to determine the total number of homeless population. Last year in 2016, some 549,928 people were estimated to be homeless in a single day based on point-in-time counts (U.S. Department of Housing and Urban Development, 2016). 68% were staying in emergency shelter, transitional housing or safe haven during this period according to the same report. Thus, 32% were sleeping on the street.
“Point in Time” is thought to provide comprehensive data. However, with a closer look at the content of the survey, one can challenge comprehensiveness. The survey includes some disability-related questions, i.e., disability type, determination, duration, documentation, confirmed status, current treatment status, and long-term status.
“Developmental disability” is an option, but the survey does not specify the diagnosis of autism as an option. Additionally, the responses are simply self-reported from the homeless individual. If individuals do not know what a “developmental disability” is, they will not know to respond with ‘yes’ if they were diagnosed with autism, learning disability, ADHD, etc.
Additionally, not every jurisdiction uses the same tool. For example, the ”2017 Point in Time” report by the Community Partnership for the Prevention of Homelessness in Washington DC did not collect data for adults with developmental disabilities in 2016.
A data collection mechanism can measure the prevalence of autism in the homeless population. With a simple addition of types of I/DD to choose from either in the Point in Time survey or intake initial assessment form, we can calculate the number of autistic adults in the shelter and provide appropriate supports.
I hope that research will be conducted to answer the following questions:
- How many people experiencing homelessness are autistic or have another I/DD?
- What kind of services is provided to homeless people on the autism spectrum, given their vulnerability as a result of having the difficulty of communicating and lack of social skills, among others?
- Are staff who give direct service to autistic adults (Intake specialist, Case manager, Addiction Counselors, Residential Counselor, Shelter Monitors, Case Aids) trained and informed on autism and related issues?
- How can a shelter offer reasonable accommodation services for homeless autistic persons with social and communication challenges when the request is supposed to be made by the people with social and communication difficulties?
It is essential that front-line staff in emergency shelters identify and communicate with autistic homeless clients. By doing so, autistic adults may equally participate in the shelter program and beyond. Effective communication among intake specialists, case managers, and shelter monitors/residential counselors is a vital step. Effective communication occurs through continual autism training. The-already-in-place collaborative partnership with other governmental or not-for-profit entities can implement autism training. Shelters may be doing what they can in providing immediate harboring to autistic homeless people. However, concerted efforts by concerned people and entities should be there to make the world a better place where every individual counts.
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This is a very good article and has raised some very good questions! As the mother of a 34 y/o autistic adult, I am very concerned for my son. I will not be here forever to help him. I hope that by the time I leave this earth that the mental health services will be well trained in autism. It wasn’t until my son was 12 when he was diagnosed with an autism spectrum disorder. I have an extreme disrespect for the mental health professionals that have “attempted” to work with my son. He is more screwed up since seeing these therapists! Unfortunately, lack of early childhood interventions has left him so disabled that he was awarded SSI benefits at the age 0f 24. And the government has nothing in place to help him other than the Adult Autism Waiver here in PA. And all they do is “get him out in the community” which basically consists of taking him shopping and to dr. appointments…and of course they provide companionship which is important as my son has no friends. If I had millions of dollars I could set him up for life after I leave this earth but I don’t have much money.
Where are these housing projects for autism? How can I get them in my area?
Parents and self-advocates are coming together to create their own solutions. The ‘Virtual Tour of Housing Options’ on the AHN Education page goes through the benefits and considerations of 18 different models. There are some different options in PA listed in the AHN Housing Directory. PA Autism also has a resource page on housing: http://www.paautism.org/resources/Siblings-Family-Members/Resource-Details/itemid/791/Housing-Options-for-Adults-with-Autism
Many families realize they can not count on others to offer solutions, so they begin to explore creating a project to meet their needs. This page offers tips on how to use the AHN to create local options: http://www.autismhousingnetwork.org/education/creating-housing-opportunities/
Although I feel your thoughts are well intended, they do absolutely nothing to help her with the problems she is facing. Her autistic son is now reaching 40. We need real life solutions, not toolkits, for real life problems.
Great point. Wel written and very specific and to the point. Appreciated and I am hoping best for your future health care career!
Good job brother! This is a good article potentially can invite other researchers for further studies.
Wish you the best to be effective in your careers
Thanks for sharing. Very informative article.
The topic you raise and the way you describe in this article make sound to identify the causes and solution of the problem, We expect more from such out smarted man.
Great job brother. I really enjoyed reading it. I appreciate the way you see problems and the connections you made between homelessness and autism. It adds huge value to the scientific research. Keep moving.
Good job Zolla ! …You’re dynamic person.You teach me in Jimma University, Ethiopia.
Love what you have done.
May I use the content from your site to bring awareness to the matters of your article.
Absolutely!
Hi my son is currently homeless and on the spectrum. We lost our apartment due to rent and losing my job. I was able to stay at my daughters home. My son is 26 yrs old is in a shelter. Do you have any suggestions on who can help me house him? He wants his own place and is not willing to share. He is high functioning but has social problems.
Greetings Myrna,
I am sorry to hear about his current situation. I will do my best to offer some resources that may help you. Just as a start, you can seek help from the following:
1) Your local Center for Independent Living is staffed by other with disabilities who can connect you with immediate help available: http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
2) Look for more affordable housing in your area or at least get on a waiting list: https://affordablehousingonline.com/
3) See if any transitional housing may be available near you: https://www.transitionalhousing.org/
Typically, we charge $100 for direct consultations, but I will waive the fee for you if you would like me to help more. If so, please email me directly: [email protected]
I am a single mother with a 5yr old autistic daughter, and we are homeless. We live in California with not many resources. I can’t take my daughter to a shelter due to her disability.
Greetings Kristi,
I am sorry to hear about your current situation. I will do my best to offer some resources that may help you. Just as a start, you can seek help from the following:
1) Your local Center for Independent Living is staffed by other with disabilities who can connect you with immediate help available: http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
2) Look for more affordable housing in your area or at least get on a waiting list: https://affordablehousingonline.com/
3) See if any transitional housing may be available near you: https://www.transitionalhousing.org/
I work at a shelter. Today, I just received a written note from a man who has been coming to our shelter for the past two years or more. He left it in our prayer urn. We were shocked he wrote as much as he did and though it doesn’t make much sense he signed his name and drew a heart with a tree next to it. He used to sign-in with an alias – Little League Giant. He is very tall. I had a hard time getting him to take a coat this past winter. He stood outside after hours one day, but walked off when I offered to get him one. By the third time I asked, he asked if it had a hood and told me he’d wait outside while I got it. He sleeps under a bridge and has been wearing the same clothes for two years but he does shower. I am guessing that he will communication thru notes but what else can I do to assure him that I understand his disability to talk?
The reality is, you do not understand his disability as you are not him. BUT he would probably appreciate you reaching out to him to affirm his value and that you want to support him in the manner he prefers. I suggest to write him a note (because this is reflecting how he reached out to you) and ask him if he prefers to communicate via written notes like this or if there is another way you can better communicate and get him what he needs. Talking may not be the best option for him… and that is ok! You have to respect how he can best communicate his needs in order to better assist him.
The homelessness and autism research hugely underestimates the number of homeless people who are autistic. The research is done by neurotypical researchers who don’t understand how to make their research accessible to roughsleepers, so that few of those taking part are going to be autistic. It’s the equivalent of doing research on vegetarians at KFC, they’re not going to find many.
I’m ex-homeless and autistic and out of all the homeless and ex-homeless autistic people I know, I think they’re all autistic and most ADHD too, though most are undiagnosed and unaware they’re autistic.
The reason the government and homeless charities are failing to reduce roughsleeping is because they don’t understand that so many are autistic and have failed to make drastic changes to meet our needs.
No, we’re not going to engage with homeless outreach workers because they’re strangers and we don’t talk to strangers. Plus they’re neurotypical so they don’t understand us.
No, we don’t want to stay in a shelter or hostel because we get overwhelmed by noise and people, the lack of privacy, having to share communal areas, being forced to interact with staff, and it messing up our routine.
Roughsleeping will continue to rise every year until the government, homeless outreach teams and homeless charities recognise that so many of us are autistic and their neurotypical homeless policies will never work for us.
Autistic homeless need a specialist team to diagnose them as waiting lists for autism assessment are very long and inaccessible because most homeless people are not registered with a doctor and are not going to stay in one health authority area that long.
In the UK autistic homeless people are priority need homeless entitled to be rehoused by the council under Housing Act 1996 Part VII 189 1c and temporary accommodation under section 188 but nobody is informing them so they have no idea and remain homeless for years on end.
Autistic homeless need to go straight into a flat with a self-contained flat as temporary accommodation as a reasonable adjustment under the Equality Act 2010, not stay in a shelter or hostel which will cause them sensory overload, shutdowns, meltdowns and to become suicidal.