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

Lotus

A lot of new members post here asking if it's a good idea to get a diagnosis - I was one of them when I joined almost 9 years ago. A lot of us older people had no idea that we could be autistic, and so of course in adults it is under diagnosed. I found an NAS article which reports the results of a study which calculated an estimate of how many people are autistic in the UK - both diagnosed and not:

https://www.autism.org.uk/advice-and-guidance/professional-practice/under-diagnosis-of-autism-in-england

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, to assist people in wheelchairs and give them access and inclusion, which of course is the right thing to do. But what is done to assist autistic people? 

There is also a lot of discussion in the media recently about possible "over diagnosis" of autism. Why do people think this? Is it because they fear the cost of diagnoses will cause tax rises? I must admit that one of the reasons I haven't pursued a diagnosis is that I know the NHS has limited funds and as I don't need support I feel it's better for those limited resources to be used by those who do need a diagnosis (including those who need it for personal validation)

So, do we increase NHS funds and encourage all those who believe they are autistic to get a formal diagnosis, or would it be better to get society to make some small adjustments to make life more comfortable and accesible for everyone?

If you think society should change practices, what would make your life easier? (Or make it easier for your autistic family member, if you're a relative of an autistic person)

The first thing I would suggest is to stop shops playing music - I went into Superdrug yesterday where music was playing and became anxious and found it difficult to process what the pharmacist was saying - so I left and went to an independent pharmacy where no music was playing, and it was a much easier experience to get what I needed.

What else can organisations do?

Parents

  • 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.

  • in reply to Martin

    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.

  • in reply to TheCatWoman

    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.

  • in reply to TheCatWoman

    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.

Reply
  • in reply to TheCatWoman

    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.

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