Should Autism Awareness week be more than baking cakes ...?

And get this. A former colleague of mine at the specialist autism unit has informed me that staff there  are 'celebrating' World Autism Awareness Week by  going in to work on Monday with - quote - 'wacky hair'.

I'm really glad I'm no longer there.  I mean, WTF is that meant to contribute to 'autism awareness'?  Another Edward Scissorhands/Tim Burton/Crazy Professor stereotype?

Yep.  Although I work for a large foundation that caters for people with all kinds of disabilities (physical and learning), including a few people with autism, the general understanding among staff of the condition is very poor.  Even one of our trainers believes that having Asperger's means that a person is 'highly autistic'.  So I've produced an A5 leaflet - 'What is Autism?' - which gives a basic introduction to the condition, and the issues that autistic people have.  I've also got a page of 'Facts, Figures and Myths' which covers stuff like education, social interaction, availability of support, and so on.  I've used it to challenge a lot of the stereotypes and the 'lack of empathy', 'anti-social', 'mental health', 'everyone's a bit autistic', 'vaccinations' and 'cures' nonsense.  I'll give copies to all of my colleagues.  I think most people are genuinely interested, so it could prove useful.  I'll see.  Several of my colleagues have openly said they would like to know more.

I'll also make it known to people that I'm happy to answer any questions they may have.

As you say, it should be a celebration of autism.

Just remembering my post from way back, as usual not much has changed.

The 'Autism Debate' was a nod in the right direction.  I wonder how many who invited their MP got a response?  I haven't had one yet, but being Harry Hopeful perhaps one will arrive soon.  Unfortunately the debate happened just as something about Europe was being discussed so MPs would have had other things on their mind....

Over the last year there has been some headway made in making people aware of autism.  Such things as the CEASE therapy being prevented from advertising and having action taken to prevent their totally misrepresenting autism and so called 'cures' are certainly a start.  But also there has been awareness made of treatment of autistic people in care homes.  However I think that real awareness of autism is still not there, not least because neurotypicals still think of it as a mental health condition.

The walk might be have positive results but only if it makes the news.  And there probably won't be enough participants to make more than a line in a local newspaper.  There is also a problem that many autistic people who have an aversion to crowds would not take part.

So Autism Awareness should be more than baking cakes (although I like the idea of putting slogans on cakes, why can't Greggs or someone get involved in baking some Autism Slogan Cakes for sale during the week and making a donation?).  Letters and press releases should be written to newspapers, together with real stories, MPs should be lobbied, and a high profile campaigns should be adopted. Facepack, Twigger, and other social media should be used for spreading information (I'm sure we could have some good points to spread to th masses) And as Clovis said last year (2018) it should be a celebration of Autism, with autistic people displaying their creative, artistic, scientific, technical and other talents in the media for all to see.  Perhaps Autism Has Talent ... and not just a Variety Entertainment Show but something which really shows how autism has 'changed the world'.

And this should be 'for life' not just for April Fool's week.  And I am sure there is not really a connection there ... or is there?.

I'll see if I can do it tomorrow. I will try to put the proposed text on this site for comments and approval beforehand.

I would support such a petition and I'm sure a lot of people would.

So will you set it up?  Include what you have written here (which I think explains the petition very well.) Promote it on social media and you never know!  If nothing else it may increase awareness of autism.

What I think is that neurodiversity should be added to the Equality Act as a protected characteristic seperate from disability. This has been recommended previously in a document regarding the Act. (The Equality Act 2010: the impact on disabled people).

If neurodiversity were a seperate protected characteristic, then we wouldn't have to prove disability in order to be protected from discrimination. And we do need that protection - otherwise, why would we have the highest unemployment rate even among other people with disabilities. People bully and mistreat us whether or not our condition causes us significant impairment in our day-to-day activity.

I am tired of being treated badly because I was born different, and I really don't see why people like me should have to prove that their difference amounts to a disability in order to be treated like everyone else.

What do you think? Should someone start a petition to add neurodiversity as a tenth protected characteristic?

Thank you for your response Ayshe.  It is much appreciated

DragonCat16 said:

What we could do is write messages about autism on the cakes in icing. Two birds with one stone, and cake too!

Many a true word said in jest!  I think that is a good idea, sort of a 'love heart' message but to do with autism!

Messages like "Autistic Meltdowns are a way of like" and "Autism is a way of literal thinking" and "Autism means solving problems in a different way", I'm sure others can do better than me!

As regards a petition, I am all for that but need to think of what we would be petitioning for - better diagnostic pathways or would we ask for something a bit less definable?  Pehaps asking for better recognition of autism as a disablement and less discrimination by official bodies would be a start.

What we could do is write messages about autism on the cakes in icing. Two birds with one stone, and cake too!

Seriously, though, has anyone thought about starting a petition for the government (petition.parliament.uk) They will listen if they think a large enough portion of the voting public supports something. We are only around 1%, but if we can get people to sign by posting about it on social media, maybe others will sign just because they consider it cool to do so.

Hi Trainspotter,

Thank you for your suggestion, we have feed it back to our Policy and Campaigns team.

In the meantime, should supporters wish to share their responses, you could send them to our Policy and Campaigns team, who would be very interested in reading the responses our supporters received from their local MP. You can email the team on campaign@nas.org.uk.

Ayshe Mod

I have noticed a link on the main website to invite your MP to a debate on 29 March 2018, and add your comments on the form of a letter on things you would like him/her to knpw, especially local issues.Very easy to complete and I hope as many as possible complete it. Thank you NAS for including this, it will get our representatives informed of the problems we face.

And if you ddo submit it I would expect a reply so it will be interesting to see what these are - could NAS include a section perhaps outside this forum for us to send the replies we receive so we can hold them to account or congratulate them depending on how words are transferred to actions?

I’ve just read a bit more. This week long campaign is about raising funds to support educational campaigns and research etc, so this autism awareness week is simply about raising funds. 

I’ve just been on the NAS website and it says that autism awareness week is simply about raising funds, nothing about spreading awareness (although obviously it does) but that it’s actually their biggest fund raising event so they encourage people to raise money in whatever way they can. 

So now I’m totally confused! Lol! Is it about fund raising or is it about something else? 

I guess it might be easier to say what their targets are, which ones they haven’t reached yet and what they propose to do to reach the targets they haven’t managed to reach yet. Lol! 

It sounds like you’re in agreement with the campaign and it’s goals/targets, but that you would like to see more wide spread coverage across popular media? I guess people who use social media could help there but getting exposure on television is pretty costly, I don’t know about radios and newspapers seem to like to sell sensational stories about how terrible things are etc so I’m not sure how NAS or autistic people go about getting their stories in newspapers. 

Does NAS give autistic people any say in the campaigns? 

Sorry, I don’t know what that means - it doesn’t have a high profile or meet its targets! Well I know what not meeting targets means, but I don’t know what the high profile means. Where is this profile, what is it, what would make it high and who would know it was high. For example, if it is related to how much exposure it got on television, I would never know about that as I don’t watch television, other than if it is on in a place where I am but even then I don’t generally watch it. 

Ok, so I’ve just read your next paragraph where you explain further. You’re saying, the campaign doesn’t get enough press coverage. Press coverage costs a lot of money, maybe as they generate more income, they could increase their press coverage?

Maybe, due to their financial restraints, the coffee mornings etc are at least an effective way of informing and educating the general public about autism? It gives autistic people the opportunity to meet with the general public and share their experiences etc on a more personal one to one level, which I know isn’t going to change policies and provisions, but it is spreading awareness isn’t it?  Is this one of their targets for the campaign? I don’t know because I know little to nothing about it or is the whole campaign aimed at the government and getting the government to change policies and procedures and provide more provisions etc? I’m a bit confused. 

You make some good points. I don’t get involved with newspapers etc but maybe a campaign could be started amongst us to approach our local radio stations etc and ask for slots to talk about autism? I don’t know, I don’t know how these things work but from what I’m gathering, the more exposure in popular media, televisions, radio etc, the more the government will do to support people with autism more successfully in society through more provisions etc. Is that right. And if so, isn’t it as they say, any exposure is good exposer and they therefore simply need to raise more money so they can get more exposure? Does that sum it up? 

In reply to Blue Ray, I have a great deal of respect for your views and realise there is more than one route to a destination.  But what I am attempting to getting across that the 'Awareness Week' seems to not have a very high profile and appears to miss the target by a long way.

If the purpose of 'Awareness Week' is to make people aware, then one would expect articles in the daily papers, articles on the radio and television, interviews with people affected by autism, explanations in the press as to what the effect of Autism on someone is and the many forms it can take.  A chance to publicise that more support should be upcoming, that it is very diffiucult to get a diagnosis as an adult, and we should explain that doctors generally are quite ignorant of how people are affected. 

I don't want to rehash my original post, on reading it again I think I put it as well as I possibly could.  Yes, we can bake cakes, we can go on a walk, we can wear a brightly coloured tee shirt.  But such things on their own will only get us lost in the general 'Awareness Weeks' of other campaigns and charities.  What we should be doing, and directed towards, is heping put our real message across  That those who are autistic in its many manifestations are very much in need of help and support. And the higher profile this gets the more  genuine 'awareness' of the condition there will be.

I’m not sure what you’re asking Trainspotter or to whom your question is directed. 

Have you got a set of markers by which to measure progress? I guess I ought to find out more about the campaign and what it’s purpose is etc and see if they have any measurable evidence. Alas, it is beyond my current capacity to get involved with even reading about it, I shall enjoy your discussions instead and learn from you guys who know more about it than me. 

So far, I’m getting the impression that people don’t support the campaign as they feel that it does more harm than good? Maybe they will abandon it then if this years has the same effect.

Did you mean years of experience from reading books and trying out their suggestions? If so, I would love it if you set up a simple website with book reviews and amazon links to buy the books etc. That would be so helpful. I’ve started to do a similar thing, I’m making notes of the books etc that have helped me so I can share my experiences with others. You could maybe even start a thread on here. 

I educate everybody I meet, regardless of their age! Lol! My granddaughter is not aware of any kid in her school with autism so slowly but surely, I’m teaching her about autism and I know she talks to her friends about the things we talk about so there’s a chance she’ll talk about autism with them as well. 

I don’t think anybody is going to listen to us if we tell them how disgusting their behaviour is. I agree, they should, but many people take things like that personally and react in a defensive mode. Maybe talking about it over a slice of cake might be more successful and certainly more pleasant. 

You raise a lot of issues, such as abuse in residential care homes, which we know happens, but not as often as the media would have people believe. Most carers are incredible people, I admire their gifts and skills so much and probably more so because it is something I would find difficult to near on impossible to do so I have great respect for them. It is becoming easier for the good staff members to whistleblow on the ones who do perpetrate harm on the people they’re caring for, and this includes family members and friends, but yes, the process of eliminating such behaviours is an ongoing work in progress both in the community and in residential care as well as in the general population at large. Many people still live with hostilities in their heads and hearts and of course they share those with others. But in terms of the general population, the carers that I know and have worked with etc, are amongst the most wonderful people I’ve ever met. Their capacity to care for others in such a way astounds me. They get a lot of bad press (apparently, I don’t actually know) and they are generally in the low paid bracket but they are lovely people. 

I too am very grateful to NAS. It has prompted me, to look into the work they do more closely at some point to see if there is something I can do to help because their services, by way of the website, has been invaluable to me. 

Have you suggested this to NAS clovis? ~ your idea of changing the name of the campaign. 

I know very little about it. I don’t read newspapers, magazines, social media, watch television, listen to radios etc so if it hadn’t of been mentioned on here, I likely wouldn’t know about it. And right now, I have little interest to know more. However, my gratitude for this site, the community group and the information on their website, has definitely prompted me to make a mental note to have a look at it when I’m ready, and decide if I think the campaign is worthwhile, what it produces and how I can help, if that’s what I decide to do. 

I do agree that we are looking for acceptance but don’t people have to first know that we exist before they can accept us? Many people I speak to have never really considered autism before. If anything, many people have so little awareness that their only clue is people they see in films. They’re often curious to find out more when I tell them I’m autistic though and they feel like their world has somehow been expanded, by hearing and learning more about autism. We both often find it a very positive experience where by we both learn something and I find you can match what you tell them to their level of awareness and sometimes it’s a lot of fun.