Under-diagnosis of autism, and how should society accommodate autistic people?

I just asked Google why shops play music, and apparently most people do like it!

The article says: "Imagine shopping in complete silence; it would feel unnatural and uncomfortable. Music fills this void, creating a more inviting and pleasant environment."

But we don't shop in silence - when I go into my local Aldi where no music is playing, there are the sounds of people talking, baskets being lifted out of the stack, tills beeping, etc. When I visit my local independent pharmacy I can communicate with the assistant or pharmacist about medications without having screeching singing in the background, unlike Boots or Superdrug.

Then it goes on to say "At its core, the goal of playing music in stores is to boost sales. Research has shown that the right kind of music can encourage shoppers to not only stay longer in the store but also to buy more."

Ahhh, so it's not really to please people, it's because they believe it makes people buy more. I wonder how robust the research was that "proved" this theory. Aldi, Lidl and Primark all achieve high levels of sales without music in their stores.

I think that stores which do want to play music should have several periods during the week where they turn it off, and not just for an hour at 8am.

TheCatWoman said:

Maybe we should think more carefully about how all children are educated

I was reading the reaction from teachers about the proposed SEND changes and their reactions were that it is a great idea but they lack the manpower and budget to be able to do what is recommended. 

The education system seems to be struggling in the same way as the NHS as the government have deprioritised their budgets over other things in the current climate.

From what I have heard there is adequate education about autism at the moment so future generations should be better informed. The trick will be to educate the working people who lack the interest and/or time to take this on.

Any suggestions on how this could be done in a positive way?

Those changes would be great, I asked the manager in my local tesco's if the music could be turned down or preferably off, but he said people like it, I asked him if he had asked people and knew for certain. When I mentioned autism, he said they they have a quiet hour at 8am on a saturday morning and agreed with me that they wouldnt have had any deliveries and that many shelves would be empty, but it was said with such a sick smile that I think he wants us to be uncomfortable.

When you've got attitudes like that, it's no wonder so many people have problems. I'm not sure education would work with some one like that who seemed to enjoy the discomfort of others.

I don't think services for people with autism should come out of the NHS budget as autism isn't a medical condition in itself, other medical conditions such as depression can arise out of being in an unfriendly environment for much of ones life. As Martin has suggested there are plenty of other, fairly minor and inexpensive things that could be done first. I'm sure that lots of places complained about the expense of having doors wide enough to admit a wheelchair and lifts to upper floors and ramps, but few people think twice about it now, it's just how things are done.

Maybe we should think more carefully about how all children are educated, not just ND people, I'm sure there are lots of small changes that would enhance learning. If we wanted to do something bigger then actually thinking about how we educate, what we educate for would be long overdue. This wouldn't be an overnight solution, but it would be a great way forward.

Lotus said:

do we increase NHS funds and encourage all those who believe they are autistic to get a formal diagnosis,

This touches on the biggest single issue we face with the NHS I believe - are we more important than others who are competing for the same extra funds.

For example, would it be better to use those funds for additional cancer screening to prevent deaths and reduce the amount of expensive treatments of the cancer. Would it be better to offer care for abused women and children, would it be better to reduce the waiting times in A&E that are at ridiculous levels, would it be better to offer better care for the elderly etc etc.

Yes we deserve more care but we have to consider where we sit in the overall scheme of demand, and what the benefits are to both us and society for that money.

For the majority of us it is about improving quality of life so  in the scheme of things it is not a priority when you consider what we are competing with. The services we would receive are also going to be ongoing support services typically so will be a cost without end. Other potential services have a much more defined lifespan (eg treating cancer, offering an escape for abused people etc) so are seen as a "fix" and not an ongoing drain on funds.

Helping others understand us is probably the best single approach to take - relatively low overhead and a significan gain for us. There will always be some who do not want to learn or who have prejudice - these will be problems we will always have though.

Lotus said:

The results suggest that 1.2 million people in the UK are autistic. That's about the same amount as use wheelchairs. Businesses, organisations and employers install ramps, disabled toilets, etc,

I get why you used this anaogy but in reality wheelchair users have a clearly identifiable need that has a straightforward solution in most cases. Autists have a wide range of possible needs, at different levels and they tend to come in a random selection so no two autists are the same, making it really hard to identify us or offer solutions that work for a significant portion of us.

Wheelchair ramps etc do not have much impact on others but it you start making people change their music, lighting etc then they will start to feel inconvenienced and this will result in pushback. Adopting a longer term approach of gradual changes out of good will is more likely to have a lesser impact on others and create a longer term soltuion for us.

Lotus said:

what is done to assist autistic people? 

Personally I think more resources should be made available for us to help ourselves and charities should setup local groups where possible where people can help autists who come looking for help. 

Expecting the non-autists to be the ones making all the changes for us (ie should 98% of people change behaviours for the sake of the 2%) is unrealistic so we are better off keeping our support systems to ourselves while larger organisations like NAS advicate for us at a much larger level.

This is just pragmatism as I have seen it produce results.

All this is just in my opinion of course.

The government, with its new SEND proposals, I think are signalling a general alarm over the potential costs of supporting children and adults with autism and ADHD etc. I think that very many people with such diagnoses could be very adequately supported and accommodated with remarkably inexpensive changes to 'the way things are done'. Turning down muzak or overbright lighting in public places, such as supermarkets, costs nothing at all for example. Letting autistic children sit in a school library instead of being forced out into noisy playgrounds is not going to cost the earth, but could make a huge difference.

I agree Martin, education would be the best way forward and believing people would be brilliant.

I wonder if NT are feeling alienated by all the people with protected characteristics? I've heard so many people saying thing's like they feel they can't say anything to or about anyone, how much of this is a genuine wish not to cause hurt and offence and how much of it is having to realise they're not the majority they like to think they are and that others have rights that need to be respected too?

I saw a survey some years ago that said white males in the work place can only cope with a maximum of 30%, non white, or male workers before they started to feel discriminated against. I wonder how much of this attitude is still prevalent? 

I think that people don't understand invisible disabilities, I have similar issues with having osteo arthritis as I do autism, if I need to sit because I'm in pain or stand up and move around I get challenged and people just can't seem to get it. Its the same with IBS, if I need to rush to the toilet people think it's some sort of lack of control and I "should" be able to wait.

I think more help centres would be good, something like the CAB, but not for benefits or legal issues, but for other things we might struggle with like filling in forms, advice and the chance to try out various types of noise cancelling headphones and resourses like autism friendly holiday resorts or, clothing brands, a library of books and research materials on autism, a place where those interested in or engaged in research could find people to help.

Its not a good idea to go for one if you are uncertain. I mean if I imagine carrying on as was, would I know how I felt was due to autism or something else, probably not. There may the 'worried well' who also see having a test for ADHD and Autism as a must. But become the worried unwell. I think i have met many who have ADHD diagnosis and were probably high performing before and their tendency not to leave things where they are lead them to refer themself. Knowing really offers no solutions, maybe greater depth of understanding (which also needs fine tuning). I don't think the diagnostic (particularly late diagn.) was set out well to assist people. The amount of messages I have read here from panicking parents, or near suicidal late diagnosed is ridiculous which is why I am watching the news in July for changes in the law. What I have realised more than anything is how the lack of top level laws is being lfagrantly abused not to employ people or for ablist employers to misuse people.  

Yes, I agree. Education,  it would be best for me if bullies stop. I experienced a lot of stress because of being bullied at school and nobody understood me. Also the terrible noise during breaks was like an electric shock but I was not allowed to spend break alone in a classroom or have earbuds.

For me personally themusic in shops is usually ok, there are other sounds that make me crumble from inside like the rustle of all those packs,  paper, noise from shopping trolleys, beeps from scanners and more. But the only thing I can do against that is covering my ears. And here I would just expect others to stop staring at me and just accept the fact that I need it. 

I have my adjustments at work I also have creative ways of explaining my issues to people without mentioning autism or any other mental issues. Fir example I explained my manager, that im not taking part in social chat, because it's too much too fast and too chaotic for me. I can talk only to one person at a time. He understood. And sometimes when they all sit and chat, he also looks in my direction to make me feel included even if I say no word in the conversation. But there are other people who are hostile to me and I hear, I'm weird, or plotting or hiding something there are some people who don't say Hallo to me at all. Those who know me better, know thst I'm just quiet or 'shy' but not antisocial. They know that im willing to help and often do it, also that im hardworking and responsible. I wish I was never bullied. I would like that other people can simply accept someone's differences without needing to comment on it, laugh it and bully. 

I think there could be an autistic club, or neurodivergent club, where you could have access to blocks, other stuff for constructing or creative work, where would be quiet and people could simply get rest, kind of socialise their own way by doing parallel activities, meet, maybe make friends. Without the necessity of having tge diagnosis. I think it could help many people.

I think the best thing to happen would be for allistics to be educated that, although an aspect of the environment might not cause you any distress whatsoever, if an autistic person tells you that something is causing them distress, you just believe them.