“You don’t know what it is like to be an Autism Carer”

I see a lot of my autistic colleagues being told this. I have been told this, often.
It comes from a deep misunderstanding of autism.

I am a parent. I am autistic. I grew up as a young carer to a desperately ill mum, without a shred of support from Church or society. What I say next is not a plea for pity, or a bid for Sainthood. It is simply a list of facts.

It was hard work to battle the systems. Get the right medical help for mum, during times when she was a danger to herself and others around her. That wasn’t evil. It was a medical situation that she could not control.  It was harder work when autistic myself, nonverbal during times of stress and overload. I learned a lot about survival. I learned a lot about love. 

 I had to organise the funerals of my parents whilst I was in my 20s.
I wonder if you can imagine what life was like? I am not alone in this history. I have good friends who are autistic and have been carers almost all their lives,

As a parent, I had to find ways to honour each autistic member of the family. Support each one to be the best they can be. Be there through good times and bad. Find a path through schools. Cope with running a business through two recessions on top of much of this.  Cope with very tough cancer treatment in 2011-12. Put up with some business and Church people making it tougher still.

I am still here.
I am still here to consider the lack of support for me as an autistic carer, and parent. Autistic parents aren’t supposed to exist, it seems. But we do. Thousands of us, caring. 
I am still here to wake up to a bunch of people telling autistic parents like me that we don’t know what it’s like to be a carer. Many good people out there of course. But some...well, where does that myth come from?

It’s simply wrong.

We know.

And, we continue to love. Continue to hope. Continue to offer our knowledge and our advice about autism. Continue to support those around us. Continue to tell people to find and hear all sorts of autistic people. Continue to campaign for equality. For justice. For the right to do the things others can do. Continue to ask for the support that all need. 

It would be great if we got support also.

We need fewer people saying, ‘...those dreadful autistic people..’ , and more saying, ‘How can we work together to bring about a good result for us all?’

Thank you for listening.

Autism Mythbusting: Employment.

"Only 16% of autistic people are meaningfully employed".  Quite often we see that said or written, in the UK, in various forms of wording.

Well, no.  

Certainly a survey of around 2000 autistic people was done by a large charity, some time ago,  They found some 32% were employed, but 16% full time.  That may be the source of the "16%" myth.

"But Ann, if it's a proper survey, it's not a myth", I can imagine some saying.

Let me explain...

You see, we have to ask who answered that survey.  People involved in some way with a support charity, thus more likely to be not-coping-too-well.  And, many of the people answering the survey were parents, not the autistic individuals themselves.  The survey was done for a campaigning purpose, by a specific charity with a specific agenda, thus not fully independent.

There's other problems with the 16% myth:

We know that many autistic adults have yet to be diagnosed. So, what are they doing?  We don't know.
We know that many autistic adults haven't a clue that they are indeed autistic, so aren't anywhere near a diagnosis.  What are they doing for a job? We don't know.
We know that many other autistic adults do not wish for a diagnosis, because they are afraid of prejudice.  Nor do they wish to disclose that they may be autistic, or disclose a self-identification as autistic.  In their view, they have found a niche, a way of being, that means they do not need to do so. A fair point of view.  What are they doing for a job? We don't know.

We know that many autistic people ask for a diagnosis and are told 'no'.  Sometimes for cost reasons.  Sometimes because of those other myths... that autistic people are all male, all geeky, all youngish, fascinated with maths and science or flapping in a corner or doing card memorisation tricks.  All white.  All of the same culture. All of whom allegedly couldn't care less about others.   A host of myths.  So, all the individuals told they aren't autistic because they are not a young white introverted boy with a liking for trains...what are they doing for jobs?  We don't know.

Generalising:

We miss the ones who are genders other than male.
We miss the ones who are extravert.
We miss the ones who are creative, kind, generous, because of myths around nastiness.
We miss those within BAME communities.
We miss the people who are older.
We miss the myriad autistic people who are already right here, next to us, in society.  Already doing a great job (though often struggling to stay employed, as the socialising is exhausting and bewildering, and their place of employment may be sensory hell for them).
Already being honest.
Already being dedicated.
Already being a huge asset to the places in which they work.
Maybe already being the employer.  I am.  I have employed people for nearly three decades.  Some autistic. Some not.  Fantastic experience.

So, who answered that survey? Mindful of a Twitter survey of some 300 autistic people, 24% of whom are in  full time employment.  Mindful also that the figure for full time employment in the general population of the UK is only 36% - so barely more than a third in full time employment anyway.  The gap is not huge.

It cannot possibly be representative of all the autistic people in the UK.  Not so much the fault of the researchers.  More a reality of a system that forces autistic people to hide, because of the horrifying myths about us.

We are also guided by research from abroad which has mentioned statistics re employment:

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-018-1645-7  A survey from a European country.  65% employed.

https://content.iospress.com/articles/work/wor2492 A survey from the US.  61% employed.

http://papyrus.nzetc.org/bitstream/handle/10063/8022/thesis_access.pdf?sequence=5 p43 showing this interesting breakdown. Each bar shows (left to right) work full time, work part time, unemployed, parent, student, self employed, volunteer and retired. 83 autistic people. 134 non-autistic.  Wide variety of ages, though the autistic people slightly younger on average.  There's no doubt that it's different.  But only a relatively small number were unemployed and doing nothing much.  We should bear in mind that 'part time' work might mean 30 hrs a week and more than enough for basic needs, so we need to move away from the idea that it's someone earning £10 a week folding papers to go into envelopes for someone, or 2 hrs a day stacking a supermarket shelf. (One of the myths about part-time work for autistic people...).
If we add up the employment/self-employment figures for the autistic people, about 54% employed.




Wider information includes informal polls of autistic people done in the UK on social media.  Here's one by Shona on Twitter. 51% employed.  Didn't ask about self-employment.  Self selecting, not checked for diagnosis, of course, but interesting, and nearly 300 responses.

So, we need to think anew re what 'non-employed' autistic people are doing. Are they all sitting around being a 'Tragic Cost To Society?'  <cue violins playing>  Nope.

Many autistic people I know are volunteers for organisations, doing fantastic community work.  Many offer fabulous support & friendship to other autistic people, helping provide a vital informal network of advice and cheer, in a world that offers most autistic people nothing at all.

Many are at home with their children, doing a wonderful job bringing up those fine young people. 

Quite a few are in full time or part time education, studying for qualifications including higher degrees.  Some are unpaid researchers, thanks to a very odd way of funding such work.

Some are unable to work because of their health situations and other situations, including a severe lack of clue about autism by some job centres and some employers.  Good to see work happening to improve this.   Often, they are then offering peer support to others online.  Some have been outright bullied out of their jobs.  Hardly their fault that they are without an income, therefore, and nothing to with 'their autism'.  It's about prejudice.

Very, very few autistic people sit around being financial and social 'burdens'.  I hate that word.  I really do.  It entirely fails to capture the humanity and worth of people of all kinds.

If you are autistic, go to work and are expected to be non-autistic when you walk through the door, that's not good for anyone's health and wellbeing.  

If you walk in and cannot see or hear in the sensory hell (when the solutions to that are simple, cheap and hurt no-one else), you can't do your job.  

If you go into the office and are met with a barrage of hostility every day, because of myths and misunderstandings (or just plain bullying) you can't remain employed.  

Above, how I see an office environment under fluorescent lighting.  One example.  Not handy. Dazzling colour. Bewildering flooring. Blinding.  Exhausting. Such lighting flickers like a strobe light, too..  A change of lighting system for my bit of the office solves it, and costs almost nothing (as there's energy savings too). Or I can work from home for a lot of things.  

I work full time, running a national company.  My sensory needs are major.  It was easy to solve.  It will be easy for most others to solve, too.  The photo at the top is my office.  Parents, I was non-verbal for years, typically autistic.  Want your young person to be doing similar?  Believe it can happen.  

There's ways round the obstacles, but people have to know the obstacles are there.  Then take them seriously.  Autism buildings access is important, and in the UK, a requirement under the Equality Act, as well as being good news for your business.  It's probably 1 in 30 of the people around you.  (No, really).  Including your customers.I'm going to be clear that I believe every single autistic person is a person of worth, a person deserving a good life, whether they are able to work or not.  Each of equal value to society.

In this blog, I'm focusing on the autistic people who are prevented from working, when they would like that opportunity.  Or who are stuck in menial jobs because of the lack of ways to progress.  Or who try their hardest to find work, and are prevented by that huge obstacle, the social-skills-interview.  [Are you an employer? No need to interview autistic people at all.  Just do a work experience test, properly thought through.  Help exists to enable this, if unsure.]

Instead of blaming 'the autism' for the employment situation, we need a better set of strategies. 

We need acknowledgement that our statistics are not good enough.  Mostly they terrify the heck out of parents, who think their child has almost no chance of a job.  That's simply not true.  It is true that some have profound support needs that mean they may not do paid work.  I and many others have worked hard for decades to help ensure that there is good support for such situations, for the person and for those providing the supports.  I am a parent to an autistic son.  I know what sort of a struggle the world gives parents.

And, as part of that, we need to be clear that few autistic people have profoundly low IQs.  I've blogged about this also, showing the research.  So it's not true that 'most' autistic people cannot communicate or work, if supported and enabled.

We need a world where it's OK to say, "I am autistic" without the threat of someone removing your job in ever-so-subtle-ways.  And some not so subtle.

We need a world where people see the word "autistic" and think, (for example), "Oh great - someone who is honest, dedicated, creative, hard working, can see different possibilities that we might miss.  I can ask them what they need for sensory environment.  That's doable.  I can skill my  workforce to respect their different way of communicating and socialising. There's good training for that at a fair price, from actually-autistic trainers. This is pretty easy.  My company benefits from having minds that can see the picture differently.  More profit, better products, better outcomes."

Then, we will have a situation that is better for everyone. 

This isn't an act of charity.  Autistic members of staff are a brilliant thing to have, when enabled.  You probably already have some...have you asked?  Have you made it OK to disclose?  Or do your specialists, your fabulous autistic team members, still have to live in fear of your responses?  Own those responses.  Change them.

Get good training in autism. Look for training companies run by, and using, autistic trainers. Or companies run by allies who bring in paid autistic people to help, who showcase autistic work.  Then you know you have autism-positive, accurate materials, not myths.

Put up positive autism-acceptance messages about your company or charity.  Make sure we know it's OK to work with you.      

Thank you for listening.