Autistic Consultant & Independent Researcher, Wenn, leading by example to empower autistic individuals and promote quality co-produced research


The autism spectrum: Ageing in an age when we have everything?

There are lots of specific things to consider for all of us as we get older. Some things rarely cross our minds as younger people because we are far too busy having fun and planning goals for the future. It's a strange thing to wake up and realize that 'the future' is now the present.

Whether it's planning for our careers, a family, an education or our retirement, there are unique challenges surrounding people with autism as we each get older. Of course, we may face the same physical and mental problems of all ageing people. However, we may need various types of support to ensure our growing old happens with safety, dignity and in the way we personally hope for.

What of social supports, appropriate housing, or those who would stand in for 'family' and be the human factor that is so often missing? There are AS individuals who lack a voice, there are even more who can speak but may not know how to communicate their needs, wants, hope and dreams. We need interpreters. We need the means to communicate and the means to put theory into practice.

We need a community of dedicated others who will make it their business to care.

If we have the right technology to enable individuals to communicate in ways that have not been available in the past, we are better off.

In AS we need individuals to support us in our ageing process, that support might not be in typical format. For example, I might have difficulties getting organized, accessing appropriate services, managing my affairs, a budget, the housework, medical appointments, tax returns, my garden or home maintenance, or even knowing how to use a telephone directory. But, I might have even more difficulty speaking on the phone, answering the door or talking to neighbours.

Sometimes I'm going to have problems even knowing what my needs are yet alone asking for help. We need those who 'get' autism and who understand that each of us is different and each of us will have a different set of needs.

6 things we need you to know:
1) Know what being AS will mean for each individual you support (how our autism impacts upon us (i.e. be AS trained; take an appropriate individual history; ask us; use observation & experience)
2) Know us individually, well enough, so that you appreciate what things interest and motivate us.
3) Know and understand how to use basic technology (e.g. iPads, iPhones, communication technology, digital cameras & DVD/Blue Ray) because these are often the means for assisting us to share with you what our concerns are (likes, dislikes, wants, hopes, dreams etc).
4) Know our sensory disposition (e.g. hypo-sensitive or hyper-sensitive) so that the right physical, emotional & social environments are made available to/for us.
5) Know how to listen and not place your own ideology/belief/perception onto us.
6) Know not to take things personally. Supporting the ageing population of AS individuals will require you to look after yourself and get your own needs met elsewhere.

This would mean AS adults receive services and support from professionals with appropriate training in autism and related needs. It would also mean AS adults be given every opportunity to have a full and rewarding life by being as much a part of the community as they possibly can be (join in clubs, activities that interest them, have access to appropriate technology, be informed and given opportunity to have a say in what their daily lives look like).

If AS adults are retired from employment, we need to be given access to appropriate leisure time activities in line with our interests and motivation levels.

The above requires specialised models for long and short term accommodation services be designed to meet the specific needs of AS adults who may need their sensory dispositions catered for (e.g. floor coverings not too patterned; soft furnishings and other furniture chosen by individuals themselves; specific support people chosen by the AS individual as far as possible; house decorated in style chosen by individual and house mates vetoed too).

For AS adults who have a dual diagnosis we will need to have access to community, health, mental health and related services and support as required. This means medications regularly monitored and adjusted as needed; health and exercise programs implemented with the AS individual taking an active role in what happens to /for them.

All of the above give the AS individual some measure of control and a say in what happens to and for them. If we mean to give the same levels of dignity, respect and 'power' to older AS individuals then we need to appreciate they experience life via their diff-ability and not as members of the generic population. However, this doesn't have to be an impediment so much as a different way of living a fulfilling life based upon common dignity that should be afforded to all human beings.