April, autism awareness month, is fast approaching.
I wrote a blog post a few days ago where I mentioned, amongst other things, that awareness alone is not enough. I’ve been thinking a lot over the last few days about how, In real terms, individuals, families and organisations can do small things that could genuinely enrich the lives of autistic people and autism families within the autism community.
I’d like to look at that more in this post, But before I do that, I wanted to give an example of how a different community took small actions which led to big changes and eventual social acceptance.
I work in a drug and alcohol addictions service, and at a recent training conference, we watched a powerful film called “The Anonymous People” which charted the development of addiction treatment in the USA, and the growth of the addictions Recovery community. There used to be so much stigma attached to addiction that people, even those who had been clean for many years, were afraid to speak out, to take pride in their recovery, to act as role models for others. The film showed that small actions such as people speaking out, sharing their stories of hope, challenging societies perception of what an “addict” looks like, were each like ripples on a lake. These ripples grew in number and strength and eventually combined into a wave that led to the abandonment of the government’s zero tolerance policy on drugs, lessened the criminalisation of those suffering addiction, and reduced the stigma attached to being a recovering addict. It demonstrated that small actions at grass roots level can lead eventually to changes in policy direction, service funding and the way that certain communities are perceived by the rest of society.
There are many times where I have heard people within the Autism community say – awareness is not enough, we need policy makers to think seriously about long term provision for those autistic people, who will need lifelong support – accommodation, respite, meaningful daytime activities. We need a different approach to families who live with violence and challenging behaviour in the home, we need a strategy that is coherent, national, forward thinking and well funded. What use are Autism awareness and acceptance campaigns when these seemingly insurmountable problems lay before us?
Those important issues have to be addressed, of course they do, and the actions of individuals are unlikely to lead to major policy shifts overnight. BUT there is still so much that individuals and small organisations can do RIGHT NOW to start creating their own ripples on the pond. Our actions are not meaningless and insignificant. Kristi – an autism Mom who first taught me (through the medium of profane ecards) that laughter could help me work through the dark parts of our autism journey, put it really well:
“I think the problem is that there are just so many battles to be fought……… But I can’t fight all those battles. I wish I could…but, there just isn’t enough of me. So I pick small things that I can do. Like post activities/crafts people can do with their ASD kiddos, the PSA’s of hotlines. These things are not huge contributions to the community. But, they are what I am capable of doing currently………….”
That’s a seemingly small thing, but actually it is an example of how one family are sharing positive things that they do to make their daily lives and their learning richer and more enjoyable, and are using free social media to share those ideas with other families. Including mine.
(Kristi’s Facebook page is http://www.facebook.com/pages/All-Over-The-Spectrum/428377047217848).
Every single autism family can create a ripple too, Some of you reading this may have the potential to make waves.
Now, I can’t chart a clear pathway for how we can all co-ordinate our actions into a cohesive campaign to lobby senators, members of parliament and lawmakers across the globe. I’m not a politician, I don’t have a manifesto.
This is not about awareness and fundraising events, or about publicity campaigns. What I have is a basic list of small ways in which everyone, from the housebound autism parent to those who run voluntary organisations and successful businesses, can step up and make their own ripples.
For individual people and families:
-Start a blog to share your experiences – invite friends and family to follow it, invite parents at your child’s school, or your colleagues. Increasing understanding within those communities who touch your lives every day can be a powerful instrument way for you and/or your child to gain acceptance.
– if you have a friend or a relative who is on the spectrum, or has an autistic child, then ask them about how they feel, ask them what support, if any, you could give to them. Read. Read about the experiences and challenges faced by autistic people and their families. Read blogs, read books, try to spend a little time getting inside this world so that you can better understand it.
-Write an open letter about your experiences, or about your concerns for service provision to the local government, or to the local media. If possible, suggest some ways in which you think improvements could be made. You could even (as one newbie Autism Mom in my area has done) see if you can get face time with budget holders and decision makers to further highlight your concerns and suggestions.
– Having a supportive understanding autism network near to you is invaluable. Could you start a support or social group in your area, or make contact with an existing one. Could you speak to your child’s team and see if they know of any other families who might want to meet up and share support. If you are already in a group/run one, have a think about how you could promote the group to reach out to more people (eg leaflets at local healthcare centres, letting the special needs lead at school know about it so they can promote it to other autism families, promote it through social media or elsewhere on the internet).
–Ask questions at school/in workplaces with regards to their policies on equality and anti bullying. If organisations feel that their practices are being scrutinised, they will be far more likely to follow them properly.
– if you are a younger person, could you get involved in a mentoring or “buddy” scheme at your school, to offer friendship to a more vulnerable child.
-Start a community/non profit company that aims to raise cash to provide grants/equipment for autism families in need.
-Find out if there are any advocacy or befriending schemes for autistic people in your area, and see if there is a way you could become involved.
– Do you have a skill or a training background? Could you become involved in providing life skill or employment skill training for autistic people, children or adults. Are you a gardener, a tradesman, a cook, an experienced business manager, good with computers, word processing, creating saleable items such as knitting, crocheting…..real employable skills that could help an autistic person to gain employment/ set up a business, and so gain financial Independance.
– If you are an autistic adult, could you reach out to to other autistic adults, or to families with autistic children, could you share your experiences? If you are in work or training, could you do anything more to make sure that your perspectives and opinions as an autistic person are sought and valued? If you feel that you would find this anxiety provoking, none of these things necessarly need to involve much face to face contact, a lot of good work could be done via social media and email.
– If you are an autism parent, could you allocate your child jobs or tasks to help them adapt to the discipline of work, and to develop their strengths. Temple Grandin herself has some clear views in this area:
She suggests that at around age 12, children on the spectrum should be given jobs suited to their interests and skills, such as dog-walking, fixing computers or working as a tour guide in a museum. “I’m seeing too many kids getting so addicted to video games that they’re not doing anything else,” she says. “You can’t make a living playing video games.” (Weintrab, K. USA Today, May 7 2013)
– Even if none of these actions are realistically possible for you, could you print out this list and give it some people who may be able to do some of the things on it, but just aren’t aware of the level of need, and the potential that they have to help make a difference.
Businesses and organisations:
– If you run a business could you provide volunteer placements or paid opportunities for autistic people who have little or no work experience?
– Could you provide equipment or resources for a volunteer scheme or community group.
– Businesses and employers: How much genuine understanding is there within your organisation about the strengths that autistic colleagues can bring to your team, how much is truly understood about the challenges they might face in the workplace. Are your Human Resources/personnel staff sufficiently trained. Are your policies for equality, bullying and recruitment, and your training, robust enough. If they do need reviewing and updating, will you be including input from Autism organisations in that process to ensure that the perspective of autistic people is considered?
– For those involved in the arts, or have an arts back ground – many autistic people have strong creative abilities, which can give them a valuable outlet for self expression. Do you have a space or an exhibition where autistic people could display their art work? Could you offer a physical space where they can get creative? Do you run or could you start a drama group, or a community choir? Could you offer instruction on dance and expressive movement to help with fitness, co-ordination and awareness of body language?
– If you are involved in the IT industry, or if you have skills in this area, could you develop an app or computer program to support learning, creating or life skills for autistic people?
– If you run a group home, residential facility, or daytime service – is there anything else that you add to your program of activities and services. For example, Could you work with craftspeople, or gardeners to produce goods and products which could be sold in the local community. I have heard of one scheme where a group home grow vegetables that fed not only themselves, but which they sell to a local school and restaurant. I am also aware of another scheme in a community mental health service where Occupational therapists and carpenters worked with service users to train them in carpentry skills, and now run a community business where the service users both repair and make furniture to order. The business makes a small profit which is ploughed back into improving facilities for the service users themselves.
This list is by no means comprehensive, it is just a few ideas that have come to mind over the last couple of days. You will probably have far more to add to this list, and I would be delighted if you did because the more diverse ideas we have, the wider the group of people who might see something on the list that captures their imagination and prompts them to get involved.
I hope someone finds it useful, I hope no-one finds anything that I have said or suggested patronising or offensive. I have tried to suggest things that would apply to a wide range of people, and that would help autistic people of varying levels of Independance, and varying ages.
Please get in touch or comment with any other ideas that you have, like I said, the more the better.
You can make ripples too, you have something to offer, you are part of this.