Autistic Adults: how can things be improved?

I've held off a little for commenting, sorry - as regards "potential corruption" I think that the real politic of recognising autism for what it is is complicated by societiy's capacity and desire to address it.  Lotus describes 1 in 34 children being diagnosed.  I make no bones about saying this is 1 in 34 children being disabled and as such under the equality act must legally be supported to their reasonable needs by definition.  Those responsible for spending public money may well be scared by the financial implications of that - therein maybe sits corruption. Ultimately tho' a rethink to see that ASD people are not a drag on society that should be repressed but they are a wonderful mostly untapped resource of people who are able to think differently in a world that desperately needs them.

This is an area on and around which we must take a much more hardline approach and we have to reject the nonsense that is told to us - we have to stop just accepting things at face value and start waking up to the truth of what is really going on, because many of these people have hidden agendas all their own - we have to realise that we have been indoctrinated and brainwashed from birth and we need to move beyond this to see the truth, warts and all 

Comment: Are Open Learn still using the guy who calls ASD an 'Intellectual Disability, because that's what the Americans call it'? I undertook their understanding autism course a few years back when teacher training and it felt really outdated. It'd be good to know if they've updated it.

1: Honestly, I feel like if you do all the indictive tests then that should be enough to skip straight on to an assessment with the psychaitrist and into diagnosis. For me I did the RAADS-R, CAT-Q, Aspie Quiz, AQ-50 before attempting to get diagnosed. Then a two and a bit year wait for the assessment. For me it was a painless 50 minutes or so, and three very long, very frustrating forms. That was the process. The indictive tests got it right over two years ago. I kinda think that the NHS is hung up on the current process, but in a world where social media has influencers and there are people self-diagnosing I do have sympathy for anyone who feels like self-diagnosis undermines the hard process they went through to get their formal diagnosis. I'd go a step further though - every autistic, ADHD person in my life knew I was autistic before I did. Seriously I would suggest that some autistic people could probably diagnose other autistic people quicker than most medical professionals.

2: I think we should be enforcing the law at the application and recruitment stages yes. Application forms are a hellscape for some people who don't 'fit' into the application form boxes. Likewise, I'd argue that any employer setting up one of the 'tests' like setting out an uneven chair to see what the interviewee will do are breaching the equality act. They're literally doing something that doesn't take into account disabilities, and/or neurodiversity. Companies can, and should do better.

3: Instinctually I think that falls into the realm of unrealistic. Though that's a personal belief and not a criticism of what you're asking. I feel like it's trying to control a world that (annoyingly) can't or won't be controlled. I was fortunate enough to spend a lot of time in a city near me during the 2010-2015 period where there was literally a shop of cafe for every taste. There were cafes that did, or didn't play music - there was choice is my point. I feel like that choice is the answer - but then I'm the type of weird that will happily sit with my laptop in a cafe on my own people watching so...

IrishInManchesterUK said:

any failure to do so in a timely manner points to potential corruption

Can you elaborate please? I'm curious as to what this refers to.

IrishInManchesterUK said:

too many managers who are useless in their roles and are massively overpaid, getting in the way of staff who are trying to provide proper patient care,

I understand what you mean here but since I spent a long time working on that side of the fence as well as on the front lines it helps to understand what they are primarily there for.

The managers are there to make sure the front line deliver what the upper management want. Not what is the best thing for patients, not to make employees happy and not to be necessarily good value for money all the time.

Managers (often in NHS roles) have to keep front line staff from doing things that are not cost effective. If there would be a benefit of giving a third of patients a CAT scan for example then a nurse may want to do this, but a manager understand there is limited availability and a massive cost to doing this, so will review and restrict what can be proposed in order to keep the department from overusing the overall budget.

They also have to try to keep the peace when staff don't get on with one another or with patients.

When one employee starts to cause disruptions in the team then they need to be brought back in line or removed and this is a careful process that needs to be done properly to avoid lawsuits. This sort of interaction is often what impacts autists as our social skills frequently lead to us clashing with others.

When staff are performing badly or not following the "company line" then the manager also has to bring that employee back to an acceptable performance level or find a way to let that employee leave. This is another situation autists find themselves in and the most common approach I've seen is for the employee to have their life made just difficult enough that they choose to leave but without grounds to sue for discrimination.

I don't support this process but I know so many managers who have used it (not specifically for autists but in general) because the effor to make an "underperforming asset" valuable again is often so difficult that they prefer to push them out instead.

Ultimately they are just people - front line staff themselves once but who were promoted and made to do a lot of the management stuff they probably don't like.

I'm sure there are a few who are on a power trip but these are often unable to perform themselves and end up being sacked.

Just some observations from my decades on the other side of that fence.

For what its worth I spent 4 years working in a supermarket while going through university and just after - I was always being pushed to move into management there as my education made me stand out amongst the rank and file of the shop floor / warehouse staff. I couldn't imagine a worse job at the time so I declined.

There also comes a point where many of the current ideas about Autism do need to be robustly challenged at every level, not least because many of these are massively outdated - any failure to do so in a timely manner points to potential corruption and this too needs to be highlighted in the interests of the truth, based on a sound moral and ethical footing and based on adherence to basic principles of moral values - the morality of leaving people with autism to struggle to their own devices without proper support in a supposedly civilised society and simply expecting them to fit in is totally unacceptable 

We should go back to the old ways where Irish Catholic Religious Orders of Priests & Nuns ran the hospitals and the mental health services properly, in a similar way to how autism charities are now supporting autistic people - already, with talk of privatising the NHS due to decades of mismanagement and wastage of funds with too many managers who are useless in their roles and are massively overpaid, getting in the way of staff who are trying to provide proper patient care, mental health and hidden disabilities needs its own separate body away from the NHS, which many NHS staff have privately said that is much needed - such a separate body would be able to focus more on directly helping people and keeping up to date with latest trends and research through regular training for all staff - given that university teaching hospitals provide a consistently higher standard of patient care, maybe they should be taken out of the NHS altogether as the NHS is potentially dragging them down and they should spearhead a separate body for MH & HD issues 

Interesting ideas.

The full testing can help remove false positives that some people can get when first testing for autism. That would be an issue with just following self reports for a diagnosis false positives. It can be useful to have information down, but it is not a diagnosis.

re: your suggestions

1:  I work as a healthcare professional in a relatively specialist field - the tricky thing about someone getting a diagnosis is that one way or another it sticks. If someone comes to me and in my "expert" assessment I disagree it can be an absolute can of worms to disentangle (not to say I can't be wrong - more that I've got a good idea of when I'm right or not or more importantly I'm not sure and how much I'm not sure...).  Having been through diagnosis by a clinical psychologist and then gone into what is involved in that in avoiding bias and being as objective as possible about what can easily be a subjective decision and also how much training and experience went into that decision I personally would advocate for more clinical psychologists ... sorry this does cost government funding but as the expression has it "if a job's worth doing..."  Statistics need to be accurate in order to be trusted.  This is not to say that self diagnosis does not have a role, AQ50 and treating as etc. and the benefits to the individual in understanding themselves better.  The number of people who are registered with their gps in the way you suggest would support the need for formal diagnostic capability.    I have to admit tho' that it's not easy or everyone with autism to recognise it in themselves.  To paraphrase Spike Milligan "it was a proud day for my family as I was dragged screaming and kicking to my diagnosis.." Knowing that it was done by a skilled professional meant a lot to me personally.and also it seems to employers et al :-)  

2: Tricky thing is tho' some people can be awful at gaming their employers.and make things harder for those who most need help..  So again formal diagnosis by qualified specialists can potentially get around this - or at least help spot patterns and put some help in place where it is best needed...  The funny thing is tho' that the health and safety at work act has in theory had this covered for years.  Using the legislation for mental health issues just doesn't seem to be working as well as it does for such things as exposure to dangerous chemicals, vibration from power tools etc.  Again if it's not being measured and represented it apparently doesn't exist...  Sometimes I wonder if this is why it isn't being measured.

3: I suspect that this would be especially hard to police.  One alternative would be to insist on provision of quiet zones - tho' this would be especially expensive in adaptations required.  Probably cheaper to issue people who want them with noise cancelling headphones that selectively  cancel or reduce the music/tannoy (suspect that could be technologically possible) in such settings.

I think that the crux of this issue is that the NT have no or very little insight into ND.  ND are waking up quicker to the problems they've been facing than the NT world is. There are strong social pressures for ND to adapt and limited social support to facilitate this.  There is perhaps a role for ND people to collectively increase awareness by their actions - however I'm not sure that as a group we are best placed or equipped to do so - I come back to the diagnostic criteria that suggest our capability in relationships and social behaviour by their very nature mean we are disadvantaged and dare I say it lack capability to do so in a "conventional" sense.  ND certainly are outnumbered in a democratic perspective.  I regret to say this may mean needing to push more to be properly recognised as disabled from a societal point of view.  Then collective/widespread action to ensure that equality legislation is followed and contraventions prosecuted might be a way?  My gut feeling is that NT society as a whole will not change unless forced to and also by subtle social manipulation. That is to say by both hard and soft tactics.  Look what has been necessary for respect, inclusion and fairness of other minority groups in society and how that has been achieved...   Attitudes and behaviour to race, ethnicity and sexuality have broadly changed for the better in my lifetime in the country i live in at least.   Look also at how hard that has been and how much is still to be done...  Nevertheless change for the better is possible :-)

I don't think everyones needs can be catered for either, if it were me and if we had any I wouldn't go into a music shop as I know it would irritate me. Likewise tannoys in supermarkets they're a nessercary evil.

My way of existing within society is to take myself away from most of it, I have to stand down wind of people who stink of laundry products, which can be a bit difficult when going to Holyhead as the whole place smells of weed and febreeze, especially afgter a ferry's docked. I don't eat out or have take-aways, because few places cater for my needs and many of them stink of meat. I shut the doors and windows on summer aternoons, as soon as anyone starts the BBQ up. I wish I could avoid getting the waft of cooking bacon and burgers from the many food trucks and fish and chip shops make me want to heave, it smells really disgusting to me.

I couldn't be around people who need noise all the time and need to be constantly voicing every thought that passes through thier heads, one of us would kill the other.

I just wish in some ways I wasn't so considerate of other peoples right to do things that trigger me, turn me into a jibbering heap, leave me sweating inside on a summers day, make me feel sick, I'd love to be able to go out for a meal or get a take away, instead of beans on toast.  But I'm not an unreasonable and selfish person to take these pleasures away from others, I just wish that sometimes, just sometimes, once a year even that I could do these things and go to these places without feeling ill, or being ill, or risking being ill.

TheCatWoman said:

I'm not trying to be difficult here, but to explain some of the difficulties I face and I'm sure are faced by others too

I guess it comes down to 2 things as to whether we can expect changes to these things:

1 - is it cost effective. Does it cost way more than any benefit it brings?

The cost here is not just how much the change makes but the impact on business too.

If you imagine a music shop (do these still exist?) where they could not play music because it may upset any autists then they would probably fall out of favour from the majority of their clientel.

Supermarkets pump the smell of their ovens to the shop to make people smell fresh bread which makes them hungry and buy more (I was a management trainee in a supermaket once long ago so learned the psychology behind their methods) - removing this means people would buy less.

The same about festive music - it gets most people "in the mood" for whatever the season is and gets them buying the merchandise.

As for the detergent smells in the supermarket, this is just a by product of the packaging contamination from the filling process or damaged items in transit. It is likely to be impractical to ever fix so I would focus on finding a way to get a facemask that works for you instead of hoping for a change to the industry packaging and shipping processes that will cost lots and deliver little for them.

2 - re your PTSD, I really don't think that there will be ways to cater for every special need such as this. I have a family member that hates silences and needs noise aroud them all the time. Unfortunately they have a strong need to be talking to others so headphones are not an option and to implement the silent solution you prefer would deny them the comfort blanket they use to deal with their own issues.

I don't think we can cater for everyone so the focus should be on the majority with accommodations for the minorities where practical. Those who fall through the cracks need to sort themselves out with ways to exist in this society.

My approach to this is to look at the bigger picture and see what is sensible to ask for, so we have a hope to achieve this while finding ways to co-exist.

The first step in any adult autism diagnosis, especially later in life, if diagnosis was performed online and report sent via email, must always be a post-diagnosis assessment to both assess level and type of autism and to assess levels and types of appropriate post diagnosis support in all areas of a person’s life, all of which must be carried out in a systematic way (doing the job properly according to proper and recognised professional standards) - this alone would be of far better help and benefit to autistic people and would dispel many of the myths and stereotypes around autism while this would also be a powerful tool in educating the public about autism issues, where following the ethical path would result in a win/win situation for everyone

Seeing as most people are wearing some kind of ear piece usually connected to thier phone where they can listen to thier own music etc as well as take calls, I don't see why music is required in shops. For those of us with PTSD ear pieces can make us more jittery and hyper vigilant, as we can't hear people coming up behind us or whats going on properly. Having someone come up behind a PTSD sufferer and touch them on the shoulder or speaking loudly to attract attention, can cause flashbacks, meltdowns and some of us react violently when surprised and then go on to have all of the previous.

I can't protect my nose or mouth adaquately with a mask, I'm not just sensitive to smells, but allergic to the contents of the smelly things, I can do things like avoid the stinky aisle in the supermarket, the ones with all the laundry stuff, but I can't avoid perfumes and smelly things entirely. Having you face swell up is really really scary, the headaches and being able to taste smelly stuff for hours after is annoying.

I've yet to find a pair of sunglasses that are dark enough to be worth the hassle, also when the sun's bright, it tends to be hot and I sweat and the sunglasses steam up and slide down my nose.

I'm not trying to be difficult here, but to explain some of the difficulties I face and I'm sure are faced by others too.

I agree there are a massive amount of undiagnosed adults out there. I think for those of us that are older (im 55) we have just got on with it. I have no issue with noise, I just zone it out, most of my issues are in social interaction and also having ADHD. I think the trouble with work is you either work in companies that have diversity training etc, or you work somewhere old school. I actually work better old school due to some views I have. I don't think there is anything specific that would help me short of being able to retire! I am currently taking some time away from work to relocate and I love it. Left two weeks ago and wont work until the spring.

I have to agree that equality and diversity is a tick box exercise. My employer boasts about being a disability confident employer scheme member but when it comes down to it they do not have a clue. it will be nearly 2 years since I disclosed my status and expected supportive discussions about adjustments. To date I have been made to feel inadequate and unconscious bias and stereotypical views have been used against me. In effect because I am different I am no longer seen as having any value.

I feel pretty much the same, Roy - thanks for the contribution.

By the way, is your new name a reference to the town in The League of Gentlemen?

"This is a local forum, for local people!" 

 "What do you want?" "A can of coke" " I can I can't? "

(Good example of communication problems!)

Some good points Iain - if I didn't know myself that I was autistic until I was in my fifties, i can't really expect others to identify me as autistic.

I think I might start a new thread about what we might be able to do to help ourselves - I'll have a think.

^^^... THIS!!

I would like to see autism not treated as such a stigma, I know personally that most probably 80% of the time I don’t ask for any accommodations as I feel I would be treated negatively.

There’s still the attitude that unless you have very high visible needs then you’re just attention seeking or faking it. I’m clumsily trying to say your needs aren’t real.

I met a friend last week who I only see once a year, we discussed something we both get told, “get a grip.” She just summed it up,”what when I can’t grip?”

I don’t always want to go to a supermarket at an early time because there’s no music for one hour per week. I used a train last week, I would have worn my earphones but being older felt conscious. The world still only sees autistic children, that needs to change.

Thank you for this excellent thread.

I am experiencing some brain fog today but hope to contribute at some point.