Who Decides Where Autistic Adults Live
For many intellectually and developmentally disabled people, large campuses or farmsteads may be better options than small group homes. But new state laws could make it hard for big facilities to survive.
In December 2014, I watched 24-year-old Andrew Parles fit wood shapes into a simple puzzle in the new vocational building at the Bancroft Lakeside Campus, a residential program in New Jersey that serves 47 adults with autism and intellectual disabilities. The task wasnt challenging for Andrew, but his team was taking it slow: Andrew was still recovering from surgery after detaching his own retinas through years of self-injurious behavior. A staff member stood nearbynot hovering, exactly, but close enough to intervene if Andrew suddenly started to hit himself in the head. His mother, Lisa, was hopeful that hed soon able to participate in the programs he had enjoyed before his surgery: working in Lakesides greenhouse, painting in the art studio, delivering food for Meals on Wheels.
Congregate settings for people with intellectual and developmental disabilities have been discouraged for years. During the 1960s, around the time Ken Kesey published One Flew Over the Cuckoos Nest, patient advocates began rejecting the idea of the mental institution, arguing that people with disabilities should and could live in their communities. Since that time, the institutionalized I/DD population has dropped by more than 80 percent.
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They Can Seem To Lack Emotion
Most of us have learned to communicate, connect and understand social clues with facial expressions and eye contact. Many people who have autism will lack expressive features. They avoid eye contact, often speak monotone and wear blank expressions. This may make them seem apathetic. They may not be able to communicate in a way we understand. But lack of expression does not mean lack of emotion or empathy.
When It Comes To Autism One Size Doesnt Fit All
If you put a PlayStation game into an Xbox, would it work? Of course not. So does that mean the Xbox is broken? No. The same thing applies for a child with autism. Just because they dont learn the way typical children do doesnt mean there is something wrong with them. It means that we as parents, caregivers, friends, neighbors and teachers need to find different ways to try and make a connection.
Laura Jones, Lambertville, New Jersey
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Housing And Community Living
Moving out of the family home is one of the biggest decisions in a persons life. For a person on the autism spectrum, finding and securing a house and caregiving supports can be complicated for you and your family.
Autism Speaks can make this planning easier through tools and resources to guide you through the process. This Housing and Community Living section contains information you need to help you search for housing options and keep you informed. As a first step, download our Housing & Residential Supports Tool Kit to help you begin your journey.
We Won’t Want To Just Get You Into Bed Straight Away
Don’t get me wrong, we lust for the physical aspect of a relationship, just like anyone else. It’s just not our only priority like it may be for some men. Even if emotions are difficult for us, we still like the emotional side of a relationship and may even have a stronger desire for romance than most people.
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People With Autism Dont Live In A Bubble Their Lives Are Rich And Colourful
For Maria Helexova, autism is her life story, her work and her mission. She is a mother of 17-years old boy with Autism spectrum disorder and she works as a head of SPOSA BB, an organization in Slovakia that helps children with ASD and their parents. Hospital clowns are regularly invited to events organized by SPOSA BB.
- You devoted your professional career to helping people with ASD as a head of organization SPOSA BB. It seems that parents of children with disabilities often establish these kind of organizations.
It is true. Being a parent of a child with ASD is difficult regarding time, mental health and especially acceptance. You need to learn to accept ASD as a part of your life, a part that you somehow cant let go. Fighting wont help. If you accept it, the path is not easy, but its easier.
- There is a common opinion that people with ASD are isolated in their own world. What is your experience?
- How are children with ASD affected by Covid-19 pandemic?
They are facing a deep isolation. Before these children used to go to events, be in contact with others. Now they lack this contact they no longer meet in schools or in organisations such as ours. Now children work on their computers and tablets. People with ASD tend to get easily irritated by too many people, many stimuluses, smells, sounds, touch. Once they get used to the virtual reality or sterile environments of their homes, it will be harder for them to come back.
They Are Visual Learners
There are many ways to learn, and being autistic makes you no different. In this age of information overload, visual support helps autistic kids move more efficiently through the day. Before we judge our loved ones with autism as slow, remember that even we regular learners sometimes need some visual aid to help us process and digest information better.
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They Have Difficulty Finding Medical Help
Being medically diagnosed with autism is not the same as having the flu where you can find quick and easy access to medical care. The condition is extremely individual and no two cases will be the same. This poses a challenge for medical doctors and therapists to medicate the condition. Because this quote from Doctor, musician and author, Stephen Shore, who was diagnosed with Asperger syndrome as a child, is true:
If youve met one person with autism, youve met one person with autism.
Your Child With Autism May Bring Out The Best In Your Family
“Our son is the oldest of our three children, and he has taught us all the importance of kindness, patience, compassion, listening and respect. These attributes allow our family to keep a very grounded and real perspective on what is truly important in life vs. what is fleeting, frivolous or simply not worthy of our energy.”
Stephanie Martin, Greenville, South Carolina
“It’s exciting and challenging because each day holds a new adventure. Despite the challenges of having a child on the spectrum, my life is perfectly complete. My son challenges me to be a better parent every single day.”
Yolanda Holmes, Greenville, South Carolina
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When You Change Your Expectations The World Will Grow
I wish we knew that autism just means different, not less. Instead of baseball games in elementary school we would have sensory integration programs. I wish we knew then that it will be OK some days will be hard, some days will be beautiful and at the end of each of them when we tuck our son into bed, the most important thing we can do is make sure he knows he is loved.
Tabatha and Tony Rainwater, Knoxville, Tennessee
Living On Your Own With Autism Can Be Possible With The Right Support
Natasha Muirhead, an adult with Asperger Syndrome living in the UK, has lived on her own for the past 13 years. From a young age, it was her wish to live independently yet she was unsure how to make this a reality. Natashas mother belonged to a parent support group that campaigned for their local autism organization, Autism West Midlands, to hire a community support practitioner to work with adults who had Asperger Syndrome. Through their continued efforts, the parents created the Asperger Syndrome Support and Enablement Team with the CSP as part of this team. The CSP listened to Natashas concerns about moving out and helped her formulate a plan for support. They went together to see their local Member of Parliament to lobby for services and explain Natashas situation at that time unemployed and living at home.
Natashas mother persuaded her to have a community care assessment done by a social worker from Social Services. The social worker completed an assessment of Natashas needs and then worked with the CSP who already knew Natasha and also understood Asperger Syndrome. Natashas parents found out about a government initiative called Supporting People which provided funding for independent living. They also applied for Housing Benefit funding leaving Natasha only 3 months to find a place to live or she would lose the housing funding. To access this type of funding, Natasha had to move from full-time employment to part-time.
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You Have A Tendency To Monologue
People with autism have a tough time interacting with others. It goes to follow that having a conversation is difficult for them at times, usually because they don’t know when to speak, when to ask questions, and do other things that people often take for granted.
“You can lecture at length on topics of interest to you, but you freeze up when confronted with making ‘small talk’ or responding to another persons questions,” says Dr. Marsh.
Other Resources To Help You Plan
Finding and maintaining a home is hard work. Remember that you dont have to do this alone. Ask your parents, doctors, and therapists for help with any questions you have about how to find and set up your home the right way.
Tap into other resources too, including:
- Online workbooks. Use references like this one from the Maryland Developmental Disabilities Administration to help you plan. Fill out the worksheets to see if living alone is right for you, and find out more about the support you might need to do so independently.
- Targeted therapy.Daily living skills, like budgeting and self-care, may not come naturally to you, but you can learn. Therapists can build programs that break down complex tasks into smaller steps you can understand and practic
- Local Autism Speaks chapters. Find out where other people with autism in your community live and how they enjoy those spaces. These local chapters may also have information on supportive homes in your area.
Never forget that people are ready and willing to help you take the steps that are right for you. People want to help. Reach out to them and explain what you need.
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A Lot Of Little Things Can Add Up
Several years ago, a local autism organization asked us what was the best housing design for adults on the spectrum. We were stumped. So we began to sift through countless reports, personal accounts and emerging research studies on adults with autism that could inform us of better ways to design such residences.
We wanted to craft design guidelines for residential settings that would enhance key quality-of-life goals that are particularly important to those on the spectrum. They include sensory balance and being able to control privacy and social interaction, in addition to having choice and independence, clarity and predictability, and access and support in the neighborhood .
With these goals in mind, we developed key criteria to assess the suitability of a home, outdoor space and community, and what design modifications might be needed to maximize its livability.
The guidelines encompass everything from big-picture suggestions at the level of the neighborhood to specific tips for individual rooms they range from the communitys social life to the durability of household fixtures.
Inside the home, predictability can be a big deal to some on the spectrum. Each room should have an obvious purpose, transitions between rooms should be smooth and their boundaries should be clear. This may help an autistic person establish routines and increase independence, while minimizing anxiety.
Living Life With Autism: Has Anything Really Changed
Image via Wikipedia
Theres so much talk of the origins of autism these days, its hard not to think of it as a childhood disorder. But we tend to forget that there is a fast growing number of adults living with autism in the country today. According to Autism Speaks, in the next decade alone, 500,000 children with autism will come of age. So we have to wonder, what lies in store for the young adults who will soon age out of the special education system? What kind of lives will they lead? Has public awareness of the disorder led to any real change?
Rough estimates suggest that there are currently between one and 1.5 million autistic adults in the country today. But because tracking the disorder is relatively recent, there arent a lot of good statistics on how the work and living situations of people on the autism spectrum have changed over the years.
Given the fact that autism is a spectrum disorder, its not surprising that people with autism live lives that are incredibly varied. Jim Ball of the Autism Society says that a majority of young adults and adults with autism are living at home with their parents. Success in group homes has not been so good, Ball says, since the facilities tend to be expensive and can pose a number of social challenges for people. On the other hand, some autistic people are getting married and having kids, says Peter Bell of Autism Speaks.
UPDATE: Please see the second part of the series, Living Life with Autism, II: Perspectives.
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Types Of Support To Help People With Asd
ASD is a lifelong disorder. You cannot change the fact that a person has ASD. But support can significantly improve the ability of that person to be successful in all areas of their life. This support is referred to as intervention.
Intensive intervention and therapy can help a person
- learn new skills
- change some behaviours that interfere with their functioning.
Intervening as early as possible helps most people, so diagnosis in young children is important.
There are many programs and supports available for people diagnosed with ASD. Interventions for ASD can include:
- occupational therapy
- training for parents, families and caregivers
- behavioural therapy, like applied behaviour analysis
- education and school planning in the form of an individual education plan
Adults With Autism Face Old Age Without Much Support
Jessica WrightWarning sign:
Fifty years ago, few people had heard of the term autism, let alone known anyone with a diagnosis. Not surprisingly, many adults with autism over the age of 50 have never been diagnosed others received their diagnoses late in life.
In either scenario, these adults enter old age facing a loss of independence that comes with unique challenges ones that society is ill-prepared to address.
An article I wrote last year highlights how little we know about aging with autism. Since then, however, there have been a smattering of studies aimed at better identifying and understanding autism and aging, along with a spate of editorials about how sorely such studies are needed1,2,3.
In most countries, a diagnosis of autism might help people gain access to support services such as visits from aides, which can make living on their own possible. And knowing that someone has autism could help others understand why certain routines, for example, may be critical for that persons well-being.
In a rare study looking at older adults with autism, Hilde Geurts, a neuropsychologist at the University of Amsterdam, followed up on the observation that many of the men and women she sees in her autism clinic also have depression. This suggested to her that older adults with depression warrant a closer look for signs of autism.
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Different Degrees Of Independence
First, its important to understand that a diagnosis of autism spectrum disorder does not mean that your child or family member will not be able to date, make friends, attend college, get married, become a parent, or have a satisfying career. People with ASD do these things and more every day.
What an ASD diagnosis does mean is that your child or family member will progress differently than people without ASD.
At Therapeutic Pathways, our team of therapists and behavior technicians work to help those diagnosed with ASD reach their full potential. This means reaching different stages of independence over time.
Again, its not possible to provide a concrete answer of how long it will take your child or family member to develop certain independent living skills. Our staff meets each client where they are and works closely with them to develop skills to keep your child safe and happy.
Some of the autism independent living skills that we encourage and develop at Therapeutic Pathways include:
Great Strengths And Abilities
In general, people with autism are honest and dependable most are focused on their work and are rarely distracted by social activities or outside interests.
Quite a few have exceptional talents in areas such as computer coding, mathematics, music, drafting, organizing, and visual arts. While it can be tough for autistic adults to set up and manage their own space and schedules, many are outstanding employees.
Some corporations have started to recognize the value of actively recruiting and hiring autistic individuals a few include:
- Freddie Mac
- SAP
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They Can Be Temperamental
Unusually, this is a sign or signal that something is wrong. When our loved ones seem to be agitated, withdrawn or manic, do not answer with a quick and impulsive response to the behavior. Instead try to understand that these behaviors are symptom of missed communication. They may be trying to tell you they are tired, frustrated or hungry.