Autistic Adults: how can things be improved?

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.

I hear about diversity and inclusion regularly from my wife all the time, She in some ways is steering this in her workplace and it’s a huge national company.

I get to hear how they are doing everything to support staff who require adjustments and a little understanding in the workplace for neurodivergent and people with disabilities.

Unfortunately what I see is different to what is being said about it all, it all looks very superficial to me and not genuine. They are expected to lead the way in diversity so it’s about ticking that box for the sake of company image.

My partner attends charity events, has lots of photographs taken for promoting diversity for the company’s website and often gives talks on the subject in meetings and events.

My partner promotes diversity for the company and not particularly because she cares enough. It makes me extremely sad to hear this while suffering emotionally at home myself. 
Getting told your weird, a freak, always looking depressed and have a memory like a goldfish is not what I would expect from someone who is supposed to be fighting our corner. 

I am quite embarrassed to share that but it’s what I see and what I experience most days. 

Sadly even when they are aware they do not really understand what it is like. It seems however much we try to explain, others, apart from those who live with us, will really not understand how much planning goes into small every day activities. Due to a lot of changes in my work at the moment I am struggling to do much at all on Fridays which are non working days, due to being so exhausted from my working week. I am getting to the stage where even mentioning it is exhausting.

In my experience, just when you think they get that I need warning or to plan my day, something unexpected gets passed to me to do.

I think, just as it is difficult for people without children to understand our daily experience as parents, those who are neurotypical can't understand what it is like for us. 

Even when people get training this doesn't always help, as I have come across people who have and think they understand, but really have no idea and don't want to listen.

All the diversity stuff employers do is just to tick a box and virtue signal. None of them mean it. Open plan offices are cheaper and are like a panopticon so they can easily monitor their employees. 

I'm gobsmacked too! What lazy thinking and totally inconsiderate and uncaring. I think this person is virtue signalling more than anything actually useful. I do wonder how much diversity awareness isn't a tick box scheme with no real intent behind it? If you look at the way things have stayed the same for other groups, like pay rates and promotion for women, employment of black and asian people, you see not a lot has changed, theres still very, very few female board members of FTSE 100 companies and women continue to earn less than men in the same roles. I don't think it will be any different for us either, it will be the same group of mostly white men deciding things and promoting others like them.

I was diagnosed by a psychologist, I don't what tests he used or anything or even if he did any?

I wish shops would stop playing music too, tanoy announcements whilst annoying are probably needed, for example when someone is needed at the tills.

I wish there was more help for adults, even if we don't need it all the time, someone we could phone or drop in and have them actually do something would be good. Also stop relying on tech to do everything, not all of us are good with tech, but theres an expectation that we will be because we're autistic. I just feel it would be nice to have been asked if I have any additional needs and have it explained to me what's on offer. For us who are late diagnosed it's not good enough to be told that seeing as you've coped all your adult life with no help you can continue to do so. Do they never consider the reason why we're going through the whole rigmarole fo diagnosis? It's because we're having problems and have had them throughout life, they've probably just been mislabled.

Pixiefox said:

1. Diagnosis for adults - does this really have to be done by a medical professional

Yes. This is due to the diagnosis being one of a disability and the corresponding impact it has on benefits, extra rights etc.

If you want to know if you are neurodiverse then it is easy enough to self diagnose but the label can be a game changer and needs to have gatekeepers to stop it being abused.

Pixiefox said:

Employers - should be required to take training in autism

A nice idea in principal but from having worked in management and in the trenches I know that management have to learn so much stuff and often don't get the time that the stuff that has less impact on the bottom line for the company is often left as a "one day we'll do it" option.

It would be great to have but realistically is isn't going to happen.

Pixiefox said:

3. Businesses - shops, cafes, public transport, etc, should stop having music playing and loud tannoy announcements

Only some autists have hearing sensitivity so even if it is half then that makes up 1% of the population. Are we really going to expect the other 99% to change what they do when we are quite capable of wearing noise cancelling headphones?

I get where you are coming from with these suggestions but I have a very pragmatic view here that we are being seen as the tail wagging the dog by pushing for all these changes when so few of us are out in these environments anyway.

Personally I think we need to learn to adapt to fit in. It won't work for all of us but those that can't/won't adapt are probably going to struggle even if all the changes are made anyway.

I think we need to learn how to protect our sensitive parts (sunglasses for bright lights, earphones for loud environments, mask for sensitive noses etc) and try to find environments that are more tolerable when needed.

Spreading awareness is going to be much better on the uptake when we can present positive examples of us in the media rather than being seen as needy, demanding and whiny and forcing people to make lots of accommodations for us.

It is a slow process so best if we take control of managing our sensitivities in the meantime.

It would really help if we weren't such a mixed bag of needs - that difficulty in people being able to identify us actually makes it look as if we are making it up or have a different mental health issue.

I think for employers to better cater to autistic people they would need to have autistic people involved. In my experience, neurotypical people seem to struggle with empathising or understanding what makes autistic people tick. They can have the best of intentions but it's quickly forgotten.

For example, where I work had an initiative to improve diversity & inclusion and celebrated Autism Awareness Day and had speakers with autism come to give presentations to the company about how to make it a better place to work. A few months later they announced a move to a new office, which was completely open plan and had no meeting rooms, and advised people could take phone calls at their desk, and people could wear headphones.

Someone asked if neurodiversity had been taken into consideration and they were told "people need to grow up, everyone is capable of working in a noisy environment once you get used to it". I was gobsmacked.

The same person had been boasting about how they celebrate neurodiversity a few months before. It seems like it's just about broadcasting your tolerance etc rather than making meaningful changes.