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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.

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  • 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.

Children
  • 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 Martin

    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.