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

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?

  • It should be abolished. So should all these ridiculous awareness weeks. There are so many that every week is an awareness week for at least five different things, four of which are ridiculous. Apart from being self-congratulatory and narcissistic, they're also irrelevant as no one pays the slightest attention to them.

  • I agree with everything you say, but with all the different alternative forms of education that we are now seeing, I see it as a positive and a move in the right direction. I know that all the alternatives are not yet available to everybody, for so many different reasons, but it's still a move in the right direction and I agree that probably the biggest change that could be made is a change in the acedemic pressure that is currently rampant, but that's going to take a lot of time, money and effort to change, but it is changing, even if the changes are slow and that's where we need to focus our attention. It's easy to say what's wrong with the system but not so easy to do anything about it, but it is changing, slowly, we have to keep the faith and do what we can, in our own little ways and continue to focus on the good and grow that. 

  • @Binary - DITTO here and glad I left at 16 ant then graduated in my mid to late 20's.  Never looked back until the recent head£$%^ (*censored by me)

  • Unfortunately, like a lot of other things in life, opportunities in education are very much the preserve of the better off: those who can afford to live near the better schools, who have the resources to pull strings, who can afford private schools or extra tuition, etc.  They know how to play the system.

  • Precisely. Blanket criticism is never helpful. Schools have an awful lot of pressures on them to meet certain targets. It would be brilliant if a lot of the academic pressure could be taken off so that children can learn at their own pace but it is how it is and like you say it is not a bad school system overall. Especially compared to some other countries. It's never going to be perfect.

    I see what you mean about several alternatives now. I was putting all those options under the term home schooling. This again isn't a one size fits all though. Someone with learning difficulties would struggle with online schooling. In these cases, yes it would be great if someone could teach them one on one but this does come at a great cost if a parent can't do it themselves. Some children also really struggle to concentrate at home so a different environment might be needed which can cause more cost. Some families would really struggle with this. 

    I also think that home schooling can be too isolating for some children. Yes school is hard for these children but if a child is struggling with social skills, them being isolated certainly won't develop them. So I don't think taking kids out of school is always a positive thing to do. Although I do think it's sometimes necessary.

    Some areas are much better set up than others for home schooling where parents collaborate to get what's best for their kids.

    I don't think theres a perfect answer for these kids a lot of the time unfortunately.

  • I think the few people who did ‘succeed’ at school, are the ones who seemed to know what they wanted to do in life or they came from homes that taught them the value of education. 

    I don’t think I would want to be considered a success by societies standards, as those standards don’t relate to my value system but I do want to achieve what I consider to be a success, which might look like societal success in some ways, but any success I achieve has little to do with societies standards, in fact, far from it. That can feel lonely sometimes as I have realised it is a good thing to share our successes with others; however, I will not give in, I will continue to carve out my success, because I would rather die than live by societies standards. 

    I remember a tutor of mine at uni, had a similar school story to mine in many ways, but she put hers down to being black. I think the majority of us never benefited that much by school and many of us were hurt by it, but at least, most of us, did come out of it with some level or education and the rest is always up to us anyway, regardless of how well we did or didn’t do at school. 

    I guess it’s like anything in life, it’s what we do with what we have, that counts. 

  • I totally agree with you Binary about how much teachers have to be aware of and how extremely difficult their jobs are and even if some schools aren’t that good, in general, we have a good school system in the U.K. and general/blanket  criticism doesn’t help anybody. 

    Chidhren can do online schooling. My friend’s daughter used to do this and she got brilliant grades and has now gone on to do extremely well at uni. 

    There are also private tutors who will homeschool and also parents who get together to homeschool their kids together, utilising various options such as joining groups with specific interests such as art or sport or acting etc. 

    We just have to get creative sometimes and when we are clear on what we want, we can make creative use of what’s available or create new options. This might all sound like too much for some people but there are people out there who can help, we just have to know what we want and be prepared to go for it and pay the price, which isn’t always financial. 

    There is always choice and there is always a way, when there is a will but we often have to look outside the box and not look at the obstacles, such as, lack of finances or whatever, in order to get to our goal. I bet there are even plenty of retired teachers who would love to help in the education of somebody who doesn’t fit into the system. It might not be easy to find alternatives, but they’re there, and we can find them if we look hard enough. 

  • School years are not my happiest memories. I was your typically misunderstood child. Not diagnosed, didn't show classic symptoms, put down as a naughty child. Yes I wish I could turn round to some of my teachers now and say see, it wasn't my fault, I wasn't deliberately rude, I didn't mean to not follow instructions. I also wish I'd been given more help with my peers. Years of bullying really took its toll.

    But I don't blame my teachers. They were not psychic. They dealt with what they saw in front of them. They were not medical professionals and just didn't have the time, knowledge or funding to give me the help I really needed.

    In some ways I was a low achiever in school. I didn't actually get low grades but lower than I should have got. And like you say in terms of society I'm now working a very low paid job even though I have a degree. But to me the fact that I have a job that (I think) I'm successful at is a massive achievement for me.

  • I'm intrigued, too.  Home-schooling is only an option for some.  It presupposes parents who have enough education themselves to be able to educate their children in turn, and to have the time to do it.  Either that or they have the financial resources to be able to afford private tutors. It certainly wouldn't have been a possibility for my parents, for instance.  There was very little choice available to them but to send me to state schools, where I endured 11 years of fear and failure (failure, at least, in terms of the kind of education that the system was meant to confer).

    Part of the difficulty, as you say, is having to work pretty much with a 'one size fits all' method.  The resources simply don't exist in the state system to cater for the multitude of conditions and situations.

    I wouldn't say that the school system 'ruined' my life.  But it certainly didn't prepare me for the challenges I would face in life and in the workplace.  On the other hand, it helped to instill in me that lifelong sense of being 'outside the mainstream', and of actually feeling grateful not to have been conditioned that way.  In many senses, it set me on a certain course through life that I've maintained to this day.  I may be a 'low-achiever' by the standards of our society.  But I'm a high-achiever in my way of looking at it.  Again, very much from the outside.

  • Working in a school, I have to agree with this. I've seen so much criticism of schools and how they deal with situations. Some is absolutely right and some is just harsh. 

    People (I'm not talking about people on here, I mean in general) quote so much about how schools need to be better trained, more knowledgeable etc about autism. And yes, it would be good if more people in schools were better trained in this. But in reality those that work in schools have to be knowledgeable about a huge number of conditions, learning difficulties, illnesses, mental health issues, social situations, family situations. This list goes on and that's before they have even started planning, teaching, marking and keeping up with their subject knowledge. People cant be experts in everything. 

    It would be amazing if their could be more SEN schools around but unfortunately this all comes at a huge cost.

    I'm intrigued though BlueRay by the many alternatives. Obviously you can home school. But what are the other alternatives?

  • You really think the school system is ruining lives? You do know it’s not compulsory don’t you? Nobody has to go to school, there are many alternative options. The school system in the U.K. may not be perfect, but are you? 

  • I love what you have said.

    I'm one of those people who is doing these things.

    I encourage everyone to do something. I have just read on a Facebook ASD page about a young boy who was put in quarantine for 5 hours at school for forgetting his PE kit. He's autistic. Are we living in the UK in 2019 or are we living in 1944 Germany or Russia sending people to Stalingrad.. it's disgusting.

    I am currently reading Dr Ross Greene book the explosive child which I would encourage everyone to read. You can pick it up second-hand on Amazon. I live in one of the counties that has the highest number of autistic children and it's going up every month. I will be writing letters and I will be getting back on the radio to talk about these things.

    An autistic child or any child would do well at school if they could.

    if you picked a person up from deepest darkest Peru in the jungle and dropped them in the middle of London how would they react. They wouldn't understand the language.. the culture.. all the social nuance  and so on. thats how  kids and people feel when they don't have the skill set to deal with situations others can deal with.

    Why do we expect a person who doesn't understand to cope when they don't have the skills or have a development issue that has never been dealt with. When are we going understand that some people have a low frustration threshold and the modern factory churn them out school system is ruining lives.

    That's not the half of it...

  • Agreed.  There's money in meds, of course.  Tons and tons of it.  Easier and more profitable to cosh us back into insensible compliance, and maybe 'passable assimilation'.

    I take no meds at all now.  And now that I'm committed to a course of counselling, I'm also committing to stopping self-medication.  I've a feeling it won't always be easy. I've stipulated to the counsellor that I'm not interested in any form of 'corrective therapy'.  I've think I've had enough damage from that.

  • Before I was diagnosed, because of stress, anxiety and depression, I was put on anti depressants.  I was not happy with it.  And my employers Occupational Health department wanted my GP to considerably increase the dose.  Needless to say I did not take that advice.

    Anti depressants do nothing to address the cause of the problem.  They just make it so you couldn't care less.  Addressing the cause of problems in autism is really what should be done, and the problems would then soon diminish and disappear.  But the thinking with medics is that if some pill or other is available then it should be used.  And look what that thinking has now done in other areas such as antibiotics where they have become increasingly ineffective.  Over or unnecessary prescribing of antidepressants causes addiction and ever increasing doses. 

    But it is just easier for a doctor to give out tablets or inject sedatives than it is to find the real cause of the problem.

  • It's good that research now seems to be moving away from the 'impairment/disability/corrective therapy' idea and more towards an acceptance of autism as a different way of perceiving, processing and responding to the world.  Still a long way to go, I fear.

    My information leaflets were, on the whole, well-received at work and provoked some interesting discussion.  Small potatoes... but maybe some people are opening their eyes a bit.

  • With Autism Week/Day, wouldn't it be nice if all these local/national government and employers had a pop-up marketplace with information on the condition.  It could also have some individuals who are happy to demonstrate their strengths together with some issues with NT's.  There is so much about cakes for this, dress up for that and exercise for the next thing.  

    Why can't we be different in bringing the world along with us, like PRIIDE, to become more visible/awareness.  

    I watched Victoria Derbyshire this morning and found it ridiculous that some are being locked up and because they are having meltdown's then they are put on medication (they did not need it before they were locked up) to supposedly help them.  Their anxiety should be addressed by understanding not sectioning!!!  Just shows how mental health awareness is ignored by those that should know better.

  • I'm getting fed up with this Autism awareness week. It's a 'fluff' type celebration used as a facade by the NAS to cover the fact that they provide next to no services for large numbers of people that they are supposed to be representing.

    The cakes are all lies but the NAS could probably sue for defamation anybody who dares to write the truth on them in icing.

  • “So place your hard-earned peanuts in my tin
    And thank the Creator you're not in the state I'm in
    So long have I been languished on the shelf
    I must give all proceedings to myself”
     
    Ian Drury
    Spasticus Autisticus 
  • It all sounds a bit 'W.I.' to me.  Knit a scarf for autism awareness.

  • I have never baked a cake.    Disappointed