Published on 12, July, 2020
The week commencing 27 March is the designated 'Autism Awareness Week'.
Looking at the NAS articles, it seems to be all about fundraising, about baking cakes, going for a walk or holding a sponsored event. All very worthy, I am sure.
But aren't we missing something really important. The slogan is 'until everyone understands'. And what will everyone understand about autism if we just bake cakes or go for a walk? That there is a condition called 'autism'. That those who are autistic can bake cakes?
'Autism awareness week' should surely be an opportunity we should all use to state our case. Anyone who has been touched by autism, from parents and carers, relations, and those who are autistic themselves - should get involved in awareness where it really counts.
And that is by contacting the newspapers, writing letters to the media, writing to our MPs, lobbying parliament, writing to local councillors, and organising campaigns where the real issues relating to autism are stated. Issues such as lack of available diagnoses for adults, the waiting time for a diagnosis, the real lack of anything having been done under the 'Autism Strategy', the fact that NHS trusts do not offer any help at all to adults who may be on the spectrum. Many MPs are on Twitter and Facebook, we could message and tweet them. Get the broadcasters, local radio especially, interested in our cause. Write an article or letter for the local newspaper on the difficulties we face in everyday life, barriers put up not by us but by the attitude of others. This is surely as important as any amount of fundraising in raising awareness.
Daily I see discussions on this forum about problems autistic people and their carers are having with authority, funds being cut, barrers put in our way. And if we also let a wide audience know of these difficulties some of this may just begin to make others understand. Some seed may fall on stony ground, but if we all did communicate our issues to the media, our lawmakers, our local councillors then maybe, just maybe, we would begin to open a few doors in the barriers that are put in our way.
But how many of us will do this?
I think the question was, what are you doing to spread awareness or influence policy. Lol! I enjoyed your description though of how these things work. I did a bit of sociology at college and university and always enjoyed the lessons.
I don’t get involved with autism awareness week, it’s not really my thing, but I have a different view of it from you.
I see it as raising awareness of autism within the general population. Not everybody knows somebody who is autistic and may have little to no awareness of it and because these cake type events and such are popular, amongst the general population, it’s a pleasant way of getting autism on their radar.
I don’t see it as an educational program. I do that on a daily basis. I tell everybody I meet that I’m autistic and if they are interested in any way, they will ask me about it. At least two people that I can think of off hand, diagnosed them selves immediately, upon hearing about my daily experiences of being an autistic person in a nt society. And many more have been hugely surprised that autism doesn’t necessarily include a learning difficulty.
In terms of influencing policy etc, I think, as you suggested, there are many things we can do. For me, I’m going to study autism at masters degree level and do a PhD. This will give me opportunities to influence policies etc. I think if people are moved to influence their government in any way, they can do this every day of the year but autism awareness week might be the prompt they were waiting for.
When I talk to people, shopkeepers etc, anybody and everybody who will listen infact, I feel like I’m doing a good job of spreading awareness and of course I always learn more about myself and other people into the bargain. And actually, I’m already unsure about the degree courses alreasy. As I am moving into solving my long standing problems with eating, I realised that that may be an avenue I go down. Food (real food) is one of my special interests so if after 2 years (the time I’m giving myself to try out this way of eating) this way is successful, I may do further study in that area and help people through their diets.
But on a daily basis, I teach people about autism, so I feel like I’m doing my bit. I don’t really deal with governments etc and charities and fund raising but because of my gratitude to the National Autistic Society, I will have a look at their campaign sometime and do what I can. Right now, that’s beyond my current capacity.
Thought I would revive my post from last year.
As I believe the points in my post are still relevant I woulld just like to ask if anything has changed from last year ...?
I wish that NAS officials would devote some time and effort to carrying out reviews of books and websites about social skills
http://community.autism.org.uk/discussions/general-discussions/general-chat/are-american-books-websites-about-social-skills-relev-0#comment-46469
Years of experience has told me that the NAS has got many of its priorities wrong.
Hello,
For years I had been falling out with others because they wanted me to admire them or join their band wagon.
A diagnosis helped me answer questions about my response to many abuses nerotypical individuals had heaped on me since a child.
We should tell are stories honestly with out the edit.
Because Autism isn't always the cause of the problems we experience.
My problem has been that because people see a quiet person they feel you will not react to abuse or defend yourself or family.
They are then highly offended when you know exactly how disgusting disabling some behaviour is & tell them or everyone else.
In order for it to stop.
What we do need is not to be seen as of low intelligence just because you don't follow some developmental stages the same time as your peers.
We need the same respect when trying to access law or services from authorities aswell.
Stereotypes about Asd having their versions of the truth doesn't help.
Just to be respected listened to, would be enough along with being able to be taken seriously when others target us for abuse.
I find there are lots of policies. Try finding people who follow them.
The nas has been helpful for me to gather information over the years. I used it to decide to get a diagnosis.
So it has its place.
But it wont be the place to discuss targeted abuse of Asd Children or Adults.
When things go wrong in residential care for those non verbal & without mental capacity !
Plus over serious issues such as sexual abuse substance abuse drinking because of anxiety.
What does psychology departments do to support these issues if you have to deal with a spectrum disorder aswell.
For instance how would they support a young male non verbal low mental capacity if he had been targeted for sexual exploitation?
Autism isn't always the problem!
People tell themselves its ok to treat certain groups as inferior because we don't all WANT to or can't fit in.
So perhaps educating children about Autism at school age would be beneficial?
The whole concept of the awareness week is that the NAS make us look like helpless but undemanding people who can be pitied. This helps their image and their fundraising. All the posters here are right that as it stands the week does almost nothing to improve the daily lot of autistic people.
Its hard for individual autistic people to make a difference and galling that, having an organisation that purports to represent and help us, we should need to try. But as the Dalai Lama says: if you think you are too small to make a difference, try sleeping in a room with a mosquito.
In my opinion it should be Autism Acceptance Week, far better that people are encouraged to accept us as we are, stop looking for cures, stop seeing us as neurodeviant and celebrate what we are.
You have it right..
Any campaign needs consistent and widespread pressure. Social Media Campaigns are also very effective. Story cards with statements from carers, family members and those with ASD. Utilising social media is the first step. Many local newspapers and even national papers source stories nowadays from social media. People don't understand. Autism to them equals Sheldon Cooper (genius, awkward but successful). Or it equals the exact opposite to them. Education of the variations of experience is important. People don't relate well to lists of traits. What people do relate to is personal experiences related in short, catchy formats. What politicians can't ignore is the chance to champion something that is gaining traction within their constituency. They might not be consistent if the 'issue' loses visibility and dies down.
The House of Lords is also a viable alternative to contact. They may not be the natural point of contact but you might find that they have more freedom to turn their focus to such a campaign. Such things aren't quick fixes, they require concerted effort and dedication. You need to make your voices heard louder than the stereotypes people have in their minds. Make them emphasise with individual and as such the collective experiences.
Of course, getting 'celebrity' figures involved is also quite effective. Psychology studies have shown in marketing examples that people will be more swayed if a likeable face they recognise is giving them a message. That and personal pleas also make it stick more in their minds. To defeat stereotypes, you need to give them true alternatives to learn.
Sorry for all of this. I was a BA Politics & Sociology major, with some psychology background. Some of what I studied had some application to what you were discussing.
Autism awareness week is the butt of many jokes. In fact I think it makes the situation worse.
No one's ever going to understand. They're all obsessed with stereotypes.