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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
  • 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.

Reply
  • 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.

Children
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