A Home of One’s Own: One Woman’s Journey to Independent Living with Autism
When you are a parent of a child with an autism spectrum disorder, you worry about the child’s future as an adult. Will they be able to live on their own? What happens if a parent is no longer able to care for their adult child? What services and supports need to be in place to make the transition from the parental home to independent living? Can independent living be an option?
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. Natasha’s mother belonged to a parent support group that campaigned for their local autism organization, Autism West Midlands, to hire a community support practitioner (CSP) to work with adults who had Asperger Syndrome. Through their continued efforts, the parents created the Asperger Syndrome Support and Enablement Team (ASSET) with the CSP as part of this team. The CSP listened to Natasha’s 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 Natasha’s situation at that time – unemployed and living at home.
Natasha’s mother persuaded her to have a community care assessment done by a social worker from Social Services. The social worker completed an assessment of Natasha’s needs and then worked with the CSP who already knew Natasha and also understood Asperger Syndrome. Natasha’s 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.
Finding the right house or apartment is essential for success
Looking for a suitable place was very stressful for the family. Natasha felt both nervous and excited looking for properties. She feared the unknown and her parents worried about safety issues. A week before the 3 month deadline to find a place, a family friend located an apartment in the newspaper. The family went to look at the apartment and even though it was untidy, Natasha instantly knew this was the place for her.
The CSP helped sort out the details to make the apartment livable such as telephoning the utility and TV cable companies, getting insurance and finding furniture. The ASSET supporters, CSP, and Natasha’s Employment Supporter all pitched in to help with the move. Natasha had a few sleepless nights in the beginning, but she made the decision to stay on her own. ASSET helped her sort out her Social Security benefits to make sure she was getting everything she was entitled to. They helped her to buy things for the apartment, taught her how to look after her things, how to deal with problems from other tenants, created a budget, and created new links for college, work and socializing.
Independent living as a person with Autism can build confidence for both parents and child
“ASSET has helped me to understand and cope with my autism better; they have helped to monitor my health, hygiene and emotional well-being and to learn to monitor this myself. They help to monitor the medication that I am on and give me advice and support on repair work. They also gave me some travel training. This involved them helping me to find out the relevant travel information and practicing the journey with me a few times so that I knew how to get to and from work. They also helped me work out what time I needed to leave home to get to work on time. They have helped me to learn how to do my own house work, do my shopping, errand running and they help with good neighbor tasks. They help me understand my own bills and correspondence. They have helped me to get into routines by having me write my own timetables and to-do lists. They are also there to offer me advice, advocacy and liaison when I need it.
I used to need a lot of help and support, approximately 15 hours per week, but I now need a lot less support. I just contact ASSET when I need to and vice versa. I am, however, aware of the fact that my support needs may fluctuate particularly if there is a major life changing event like bereavement or moving home. ASSET has provided me with a knowledge checklist, which I keep with me in my filing systems, also organized by ASSET. The knowledge checklists are basically there for me to refer to so I know what to do if there is a problem in my home without necessarily having to contact ASSET. I also have a Tenancy Support Handbook which includes who ASSET is, what tenancy support is, what they can help me with, setting up support, code of conduct, other appointments, sickness and holidays, who to call in emergencies, complaints and feedback, health and safety in my home, a notes section, my Support Worker’s contact details and emergency numbers.”
Natasha has been very happy living independently and says,
“I really like the fact that I can have my own personal space when I feel that I want and need to and then when I want to be in the company of others I can do this also. It can sometimes get lonely because I do not have anyone else to share things with in the same way that I would if I lived with others but then I know that if I do need to share anything with others all I need to do is contact them about it. My immediate family in particular live very close to me so they are never far away if I need them or vice versa. I have found that I can do things for my family which I was unable to do before such as have them round for dinner, come round to their house to help look after the family cat whilst they are away, help look after them when they are ill, and help them with the gardening and housework. I think now that I am living on my own I appreciate exactly how much work is involved in running a home and now I am far more willing to help out because I understand what they did for me when I was still living with them. I can also help them to choose and buy items for their homes too. I find this very rewarding and satisfying particularly since they have done so much for me for such a long time. Although I currently need a minimal amount of support from ASSET, it still gives my parents and me peace of mind because we know they exist. My parents and I do not have to worry about how I will cope with life when they are no longer around.”
Through support and assistance from government departments, the community, services offered by Autism West Midlands, and her parents, Natasha has had a positive and successful experience living on her own. She is an inspiration and great example of how to make the dream of independent living a reality.
How can we support independent living with Autism in Canada and the US?
Natasha is a UK success story. Many of the steps that she took could be applicable in other countries. In Canada, the supports vary throughout the country because housing falls under the provincial government. Although this is a US website, this page gives good information on the types of housing models. Autism Speaks has a Housing and Residential Supports Toolkit to assist in planning and understanding housing and residential supports. The Government of Ontario has an Adult Supportive Housing page on their website. The Canadian Mortgage and Housing Corporation lists links for every provincial and territorial partner responsible for affordable housing.
Contact your local autism society to see what housing initiatives and options are available in your community. There are also projects started by parents such as Open Sky in Sackville, NB.