No Support

Ok but we're talking about adults with high functioning autism. I know some of us certainly have difficulty finding work because our soft skills are lacking but our technical skills and qualifications are often very good. Work coaching is more about finding ways to insert ourselves into the specific industries we're well qualified for. And social housing often inappropriate for adults with high functioning autism.

Social inclusion requires so much more than just trying to put a lot of autistic people together in a room and asking them to play scrabble or something like that. We need services for social mainstreaming. Ways to help autistic people build social lives among neurotypicals. There aren't enough high functioning autistic people out there for them to find other autistic people on their 'wavelength.'

Some autistic people are introverts, others extroverts, some noisy, some quiet, and they have a huge range of different interests. It's going to be far more effective to help a noisy, extroverted autistic person integrate with a community of noisy extroverted neurotyicals who share their interests than with a bunch of quiet introverted autistic people who don't. But that doesn't mean its easy and doesn't require help.

These sorts of mainstreaming services don't exist. The closest thing I've heard about is a support worker who might accompany an autistic person and hold their hand, but that's only helpful if the support worker can actually find a suitable event or activity that said autistic person can go to.

It's not about money. It's about support. Some of the support is hidden or only accessible once a needs assessment has taken place. Some of the the support most people need is locked behind a  referral system. once the needs assessment has taken place  then they will be able to access to support and sign post to specialist organisations that specialise in people with autism like genius within and the social inclusion and housing support. 

Despite lockdown local authorities have spent significant money into looking into employment for disabled people and housing support. Its why many councils have increased council tax to pay for the additionals in social care and support services.

Needs assessments can help a lot of people but my concern is that it only provides a modest amount of money, it doesn’t do anything to ensure there are suitable services localy to spend that money on.

call your Local authorities for a needs assessment, they can arrange extra pre and post employment support. A needs assessment isn’t only for people who need significant care needs but for anyone who needs extra support.

the needs assessment can result in support with rehousing, employment , educational opportunities, social events, benefits and basic life skills. 

You're not wrong. I also got 0 support after my diagnosis. There are several support groups for autistic kids in my area ... although to be honest I have to wonder if a lot of them aren't really more for the benefit of the parents of autistic kids. And there is help in schools. yes as some one says you have to fight for it but it is there if you push for it. The same is true for autistic adults who struggle to care for their own physical needs, the support is there although you may need to chase it. But for the other needs, social, romantic, economic? There is either no support or the same type of support offered to adults more generally which is often unsuitable for autistic persons.

My opinion is that this situation exists because circumstances compel authorities to address the issue of autistic children and vulnerable autistic adults. They do it begrudgingly because if they don't it causes larger problems or scandals. The law says children must receive an education but autistic children in school who's needs are not properly met are likely to be disruptive, however if they merely get excluded from school after school with out additional support being provided it becomes obvious that the school is failing the autistic child not the other way around and the prospect of a lawsuit rears its head.

Likewise with vulnerable autistic adults they are likely to be the victims of crime, or suffer ill health from poor self care, they may even die. All situations that can lead to court cases or inquiries.

Until the lack of support offered to high functioning autistic people has the potential to lead to someone somewhere loosing their job for incompetence or negligence the support for high functioning autistic people will not improve. As the old saying goes it's the squeaky wheel that gets the oil. I have to say often I wish that, as a community, we were more militant. It would benefit us in the long run.

In fairness to the powers that be in part its because they don't have a clue what to do with us. It's only now that diagnosis of autism is much more widespread that high functioning individuals who previously flew under the health systems radar and coming out of the woodwork. The studies on employment and social integration in high functioning adults with autism are very sparse and there is little will in government to use the public purse to fund interventions on an experimental basis.

We either have to wait a generation for researchers to get their ducks lined in a row or we have to start dictating the agenda and telling the government (as loudly as posable) what we, as autistic people, think we need.

I haven't read the full thread so if I've missed a reply, or covered something you've already had experience of, apologies. 

It's very messy. Getting the diagnosis is the first step (at 46!) - even with that I'm still working with folk at work trying to get them to understand it. 

I had three follow-up sessions with a clinical psychologist (I can have more, but it's pricey) and paid for counselling privately. The rest has been this forum, books and whatever webinars and You Tube video's I can get my hands on. Some of the behaviour adjustments, and things I ought do do, are difficult - even now at work I find myself not being disciplined enough with regular breaks or closing down conversations (if I'm absorbed in something - I don't switch off very well). It's much worse when I'm tired - so I'm having to "nudge" myself every day instead of looking at a place I need to be or reach. 

In terms of employment support, which I'm guessing is one of the things you're looking for, there is stuff out there - it's knowing where to find it, and finding those employers who are willing to make adjustments (although I've just started to understand how chaotic people are when working together - so my experience in getting those adjustments, which really is just good working practice, has been nigh impossible).

Living Autism has a list of useful links @ https://livingautism.com/ and https://livingautism.com/employment-support-autistic-individuals/

And the NAS has a page @ https://www.autism.org.uk/what-we-do/employment

You could focus on employers who have signed up to the governments disability confident scheme https://www.gov.uk/government/publications/disability-confident-employers-that-have-signed-up (Look past the "disability" label- as that's a whole different conversation.The scheme is purely voluntary though, so there's no guarantee of the standard of support).

If in doubt, try some stuff out through volunteering. 

If there's local autism charities/social enterprises in your area they may be worth reaching out to. Your council should have a list of ones in your area.

Not to forget some universities do lifelong career support. If there's on regret I had after graduating it was not making enough (any) use of mine.  I spent a while looking for the ideal job and then decided to settle for one that would pay the bills. There's a few regrets in there but in terms of security I'm in a good place. 

The sense of feeling lost post graduation I'd suggest isn't uncommon - but is probably exacerbated by your autism. If possible counselling may help to give you a starting point - my therapist was invaluable only in that there was someone there to listen without judgement which was enough to get me going and get me back to work.

E

Apologies and I don't want to take over this thread but yes I feel there is no support. I had a private assessment at the start of this year with an excellent report and recommendations but feel I'm left to fend for myself now.  Now the world is starting to open up again, I feel I'm going back to square one. I've got this new knowledge about myself but don't know what yo do with it. I don't want things to go back to how they were. I did a NAS search of services in my area and unless you are a child, carer, parent, or someone with more severe difficulties there's no support. I'm thinking of starting my own support group.

I've felt quite low about it today really. You say we can cope on our own. I don't feel I can. People do care but I feel I need professional support and don't really know where to turn.

metalmickey said:

it feels like being in such a deep abyss between being nowhere near impaired enough to be deemed an ESA/PIP case, yet too impaired to be employers' first choice. 

A very familiar situation for me.  In 2018 I was fired for being unemployable due to my bizzare behaviour.  That's what was said at my dismissal hearing.

I was encouraged to apply for PIP by a debt advisor.  I scored zero points for PIP.  And that report found me to be completely normal with no issues of any kind.

Another recently active thread on the subject of work is this one.

NAS69281 said:

my biggest struggle at the moment is finding employment. I completed a degree with a 2.1 so I am perfectly capable. I can't seem to decide what I might like to do. I will think of something and then obsess over it for a few weeks and then it will peter out until I've pretty much forgotten about it. I know a few things I definitely don't want; desk/office job, anything customer related (fewer people the better!)

I have computer and numeracy skills so would be well suited to a 'back office' role with a lot of spreadsheet / database / finance work but roles are combined with reception / telephone / customer / public elements, can sort of understand the feeling of not wanting any kind of office work but for me personally still don't know what I'd do instead.  My ideal would be if I could find that next employer with that willingness to utilise my skills in the back office capacity without the front stuff.

Robert124 said:

I want to get back into computer programming and software development.  But my skills are out of date

That was the same problem for me after my redundancy from my last programming job in 2002, and I've just posted about my difficulty fitting in at that company on the other thread.  While I did still have a few interviews, even though the skill I had was declining, always found that companies didn't just want a "programmer" but a customer facing "analyst/programmer" and were seeking ambition to climb the career ladder.

Trei said:

for those of us in the higher functioning end, apart from getting concessions in work, if you're one of the ones lucky enough to find a supportive employer to give you a job in the first place, then there really is nothing. I don't count CBT as support, because it seeks to alter our way of thinking when there is nothing wrong with our way of thinking or being. We just need reasonable adjustments & acceptance in life

This quote really sums up what I put towards the end of my first post on the other thread, it feels like being in such a deep abyss between being nowhere near impaired enough to be deemed an ESA/PIP case, yet too impaired to be employers' first choice.  I agree about CBT, and another over-used word ‘coaching’, real support would be if someone could introduce us to employers who would value our strengths with roles to use them, without trying to 'therapise'/'coach' us on the things we are never going to change by definition of the condition.

Cool - I did CSS, Java, PHP etc. some years ago (it's why this site annoys me so much - it's not that hard!)

I want to get back into computer programming and software development.  But my skills are out of date, so I am trying to make them more relevant.

In this lockdown I've taken several short, free courses on cyber security, modern programming techniques, web development, user interfaces for mobile devices, the basics of HTML, CSS, JavaScript.  At the moment I am 3/4 of the way through a Cisco programming course in Python.

same ive got no help :(

What do you like to do?    Researchers and Technical programming should be solo enough to hide in?

I considered getting into mobile phone base station maintenance - or wind and solar farms - out and about, doing my own thing.

I have an open mind about what kind of jobs I go for.

My life has been a mess for a very long time.

My home life from birth has been twisted upside down and inside out.

Recently I have gone for any jobs that the job centre has forced me to apply for in order not to lose my benefits.

My real problem is my inability to get along with people because my communication skills are inadequate and my body language is unorthodox.  As soon as I start a job, I notice that the management want me out because I don't fit in with the rest of the workforce.

I have had jobs in routine clerical work, technical programming jobs, user support, retail, support worker for disabled people, cleaner, researcher in a university, home carer.

I've also been kicked off training courses for spurious reasons.

What jobs do you go for?   It's normal to choose completely incompatible jobs - maybe you're destined to be a Bee keeper? 

You're right sadly, for those of us in the higher functioning end, apart from getting concessions in work, if you're one of the ones lucky enough to find a supportive employer to give you a job in the first place, then there really is nothing. I don't count CBT as support, because it seeks to alter our way of thinking when there is nothing wrong with our way of thinking or being. We just need reasonable adjustments & acceptance in life. Post diagnosis support for kids is largely zero too unless the parent is prepared to fight tooth & nail for it. When I got my first child diagnosed I wrongly believed that the dx was like a golden ticket to help & support. How wrong was I? It was just one huge fight in a lifetime of fights to get them the best life outcome possible. Anything better than mine is an improvement!

The big support is talking here.

By writing about your problems on an open website you get some of the pent up stress off your chest and there is always a possibility that someone can offer useful advice.

I also have great difficulty keeping jobs, although I have more qualifications than I know what to do with.

I had CBT before my diagnosis and I found it a complete waste of time. It just wasn't what I needed at all. I completely agree with you, its not my way of thinking that needs to change. 

Thank you all for your replies. Firstly, I realised after I posted that I should have said 78% not 88%.

But anyway, my biggest struggle at the moment is finding employment. I completed a degree with a 2.1 so I am perfectly capable. I can't seem to decide what I might like to do. I will think of something and then obsess over it for a few weeks and then it will peter out until I've pretty much forgotten about it. I know a few things I definitely don't want; desk/office job, anything customer related (fewer people the better!) I just can't seem to commit to anything and it's infuriating. I'm in Hampshire and their Autism service was less than helpful unfortunately.

In my health authority after diagnosis you may receive up to two follow up sessions. 

Wow. 

I was lucky to have a private diagnosis and 1 session for me and 1 for my wife, thanks to a charity who paid for my diagnosis, but then I was on my own. 

I might have been able to access CBT via my GP or self-referred but doubted its value to me as it is very symptom and underlying thinking focused. If my thinking is a function of my identity I don't really want to engage with something that would want to change it. Recognising if and when I am brooding on something (persevering) or anxious is probably enough insight for me at the moment.