Monday, 28 August 2017

Who is Ann?

Sometimes, I get people who are puzzled about who I am, and why I do what I do.  I can understand that.  It may help to explain some background.

I'm Ann.  I live in England, with my husband and son.  We're all autistic.  Different sorts of autistic, too.  Also sharing our household are my sister, and the family dog and cat.

None of what follows is a 'pity party'.  I'm comfortable with all of it.  It is simply my past.

I came from a family that was its own enigma.  Both my parents died many years ago.  My Dad was a bookbinder by trade, then became a factory worker and Trade Union chief.  In later years, he was sponsored by the Trade Union to become the country's first ever Trade Union background Magistrate.  Our lives were punctuated by many a Police Officer turning up at the door to get papers signed, and many legal books in the bookshelves.  Mum had been one of the first ever female Computer Operators, until being given the wrong medication led to a spiral of illness.   It was odd, being faced with a world involving Magistrates, because we were not a rich family.  This is an understatement.  We were on free school meals, and second hand clothes, and growing what we could manage to eat.  We lived in a big end terraced house, which was bought with no plaster on the walls, and one sink.  Heating it was a luxury we could rarely afford, so we kept one room warm.  DIY took years, but we got the house gradually into working order.

I was typically autistic (rocking, lining up things, etc) and non-verbal for the first ten years of life.  To be precise, I could speak, but it was echolalia. I would copy phrases I'd heard others say, without any idea why, or indeed any clear idea about what anyone else was doing around me.  Absolutely no idea how to use language for social communication. Often completely non-verbal, which people mistook as quiet well-behaved behaviour.   I am still sometimes non-verbal.  People generally don't notice; I've become an expert in 'plausible absences' during those bits.  But I can use technology to communicate, so am keen to get myself into social difficulties all over the social media (joking) (mmm, thinking about it, not really joking...).  It's amazing how many misunderstandings of intent there can be, eh...

Growing up as a young autistic carer was an experience.  I won't go more into that right now.  I'm still a carer, because all three of us in the family care for each other. 

I lived, and live, with multiple health and physical difficulties also.  Remember, this is not a tragedy - this is simply an explanation of the experiences I have.  If you are a person of a nervous disposition, go get strong tea or something and skip to the end paragraphs.  Not literal skipping.  All of these experience have given me insights into those sorts of experiences for others.  

I developed a spinal scoliosis, which has led to arthritis...and later to two shoulder operations to make room for trapped nerves that caused much pain for quite some time.   I'm faceblind, which means I cannot identify people by looking at their faces.  In 2011, I was diagnosed with an aggressive form of breast cancer, and survived chemotherapy, radiotherapy, surgery and a 'wonderdrug'.  That left me with nerve damage of various kinds, and something to say about medical treatment and how accessible it is for autism.

As an older teenager, trying to care for a very ill Mum, and be the primary wage earner for the family during a time when my Dad's health was also failing....well, it's fair to say that the pressure got to me.  As it would to anyone, autistic or not.  I developed severe anxiety that led to OCD and agoraphobia.  It was a long haul out of the worst of that. Without medical help. Couldn't access it.

All though this, my faith in God kept me going.  i wasn't a churchgoer, because I couldn't access church.  But I had no doubt at all that God was there, and walking alongside me.  A few times, picking me up and setting me back on my proverbial feet.  I have friends of all kinds of faiths and of no faith at all.  All loved.

I left school and went into working at the Treasury of the local Council.  Maths and computers.  I could do those.  Made no friends. 

From that, I went to work with Computacenter, with the fabulous multimillionaire boss, Phil Hulme.  He taught me everything I needed to learn about good management skills.  He was kind, straightforward, always happy to join in with tasks, and treated us all as equals.   I became a well respected computer trainer.  Every day, I was teaching people something I knew, and could pace it for how much I could handle.  It was ideal for my set of abilities and needs.  Actually made two friends.  This was amazing.

That style of management became a model for running our own business; hubby and I set up a firm of Chartered Surveyors.  He's one of the country's top experts in Surveying, and has been for decades.  Remarkable man.  Near-photographic memory, amazing ability to spot potential in property transactions.  Nearly 18 years later, the firm is still doing really well, thanks to the clients we have and the excellent contacts across the country.  Do most of them realise we're autistic?  Perhaps not.  Makes no difference; my skills in mapping, computers, research and equestrian property, hubby and team's skills in Surveying, and the excellent support we have from the accounts and report-writings team members mean we can all provide an extraordinary service.  The one Surveying firm in the country that has literally never had an insurance claim against it.  Not smug.  Just accurate. You're looking at autistic advantage there.  

Meantime...I became a Trustee of charities, and indeed a School Governor for a good few years.  I specialised in helping people who were experiencing domestic abuse, and also in helping people who were new to autism.  Twenty years later, working part time on this, I'm honoured to work with excellent autistic teams across the UK.  I help train a lot of medical professionals on autism.  I speak at conferences about how important it is to be positive about autism.  And, how loved every single autistic person is.  No matter what their IQ, background, ability, personality or any other characteristic.  I've been a pioneer in talking about the strong links to LGBTQ in the autistic population, and have worked with church groups on autism and LGBTQ discussions and gatherings.   I do a lot of work with historic properties, also, making sure they are as accessible and inclusive as possible for autistic people.  I train clergy teams on working with autistic colleagues and parishioners.   I'm co-writing a book on autism and theology with a lovely theologian friend.  I am working on helping the medical communities understand autism and suicide.  For six years, recently, I worked with the Government, as an adviser for their autism group. I retired from this to let others have a chance, and because of exhaustion trying to reason against some ABA promoters (a form of autism therapy).   And I'm cheering on our son, Chris, who is becoming well known as a speaker at autism conferences and well respected as a respite care worker. His is PDA autism. (Not Asperger syndrome). I can't begin to explain how much he's brought to our lives, watching him finding his own ways to steer a course round life's obstacles.  Tackling national level rugby, and having studied Psychology & Counselling for his Degree. [So much for the myth that autistic people can't possibly understand others...]

I shouldn't be here.  There have been so many times in my life when I could have been dead.  But I'm still here.  Not smug about that - just astonished.  And I still keep working towards a world where autistic people are recognised as the lovely people that most are. Given the same chances.  Allowed to thrive and love, and contribute, in whatever form they best can.  Kept safe from some of the appalling targeting, bullying and abuse that most of us have survived.  Enough about that, though.

Do I have all the answers?  No.  No-one does.  But 20 years of working with fabulous autistic and disabled people of all kinds - and my sets of experiences - has given me plenty of insights.

Am I important?  I hope not.  If it's 'about me', something's gone wrong.  It should be about everyone working together and bringing their own selves to that.  Each equally respected.  Do I want fame and fortune?  No thanks.  I hide if there's too much focus on me. I regularly turn down invitations to speak on radio, etc.  I'd prefer not to be on media at all, but I can't think how else to help get information out there.

Will I always phrase things 'correctly'?  No.  I think in pictures, not in words, so it can take me a couple of attempts to write something.  I'm sometimes non-verbal. And, I often speak in autistic, not non-autistic, so my communication will be different sometimes.  It's never meant to be rude.  Not to anyone at all.

There's more to say about life, particularly how I'm involved in LGBTQ groups, working towards a world where there is equality of love and relationship for gay and lesbian couples, etc.  Sometimes you'll note me identifying as part of this community....whilst married faithfully to a lovely man. That's a back-story that is for another time. No, it wouldn't make tabloid headlines.

So, your question is this: Can a non-verbal and autistic child from a background of poverty go on to make a small difference in the world? 
Can your child?

Assume competence. Even if you cannot imagine for one second how that future is going to happen.   I couldn't for a moment have imagined being MD of a national company, when i was that child.  Nor being a national speaker on this subject.   I am truly blessed with all of the people around me who have made that possible.

Thank you for listening.  I hope that a small amount of it has been helpful in some way.