Wednesday, 28 March 2012

Neil discusses campaigning on employment

20th March 2012 and the eve of the budget. The concerns of the nation are how much more will public services be cutback upon. And yet there, in the House Of Commons, was the NAS launching their campaign "The Undiscovered Workforce".
Now times are tough for everybody, and it is always likely to be the dream of any government to get as many people as possible back into employment, not only to improve the pride of the nation, reduce the amount of benefit being paid whilst at the same time increasing the amount of tax being received through earnings, but also because of the enormous loss of production from untapped talent.
Some of the most untapped talent comes from the Autistic community. Many of these are highly intellectual, in fact it is rumoured that Einstein himself probably had Aspergers Syndrome, and yet only 15% are in full-time employment, and even for these, they might be under-achieving because their employers are not making the necessary adjustments to get the best out of them.
The guest list at the launch party did have a wide variety of the types of people involved - several Members of Parliament, of course (otherwise why have the event there?), people who work for the NAS, some employers and, significantly, a number of people with Aspergers Syndrome, including myself.
I was invited in my role as an ambassador for the Autistic Action Network campaigning on employment issues, and in two months time will be hosting an event of my own featuring the American writer Rudy Simone, who herself has Aspergers Syndrome and had many issues in jobs where she worked before she became self-employed as a writer and speaker on the subject. I am hoping that this event will attract employers and open their minds.
It is very important to involve all these types of people in order to ensure that the conditions are put in place to enable those of us with Aspergers Syndrome and Autism who have the ability to be on benefit to employers and make them more profitable, to be able to realise our potential.
This will be a slow process but for now, the first thing I would like to see implemented is training of Human Resources managers on the issues facing people with Aspergers Syndrome and high-functioning Autism as part of their curriculum. This would be in liaison with the CIPD. As one of the parties of our coalition government once said "education, education, education", let us at least see this start to happen.
It will take the involvement of many people for this to happen. Governments cannot do it alone, nor can the NAS Prospects team nor people with Aspergers Syndrome. We must all learn to work together to achieve this goal.

Friday, 23 March 2012

Michele tells it how it is to MPs!

I am proud and honoured to have been chosen as an ambassador for the National Autistic Society and I hope I can help to develop further awareness of autism in all its many shapes and guises and give a voice to other parents who may not, for whatever reason, be able to speak out or stand up for themselves and their children.
My 10 year old son Dylan is gorgeous, funny, smart, witty, crafty, mischievious, loving and has ADHD and high-functioning autism.
He is also prone to regular meltdowns, agressive outbursts, can turn the air blue when he's 'in one' and has been know to tip over tables, throw pencil pots, bite teachers, try to jump out of windows, break or throw any object which comes to hand and, on two occasions (the other just last week!) do a runner from school only to be found my the police. Scary stuff I can tell you!
So I know a bit about working with schools and teachers and trying to ensure my son gets the support he needs in mainstream primary to thrive and be happy.
It's not been easy. We've had many battles along the way but the progress we have all made (Dylan, school and my ex-husband and I) has been phenomenal.
A turning point, I believe, was when I explained to the head teacher that none of this was personal - but if I didn't fight for my son who else would?
So, with my own experiences to share, I joined the team from the National Autistic Society a couple of weeks back to address Members of Parliament at the House of Commons. Wow! What an experience that was. If you've never been inside Westminster before and get a chance to, do take it. What a stunning building! So much history!
I was joined by a fellow parent, some very impressive educators and two fantastic young people on the spectrum and we were given the chance to share our thoughts and answer MP's questions about our experiences.
For many this could be a daunting experience but it seems I was gifted with a big gob so talking to people is never an issue for me! And I hope that my thoughts and views on education and autism (which I know echo those of the many wonderful friends I have made through my local autism support group) might help to shape a better system for our children who deserve the same rights to a good and happy and secure education and childhood as any other.
It was a real privilege to be asked and I have to say one of the proudest moments of my life.

Monday, 19 March 2012

PILGRIM'S PROGRESS - My Ambassador story so far

I was elected to be an ambassador at the end of 2011 and it was by far one of the proudest moments of my life. Sure winning the Bring it on Britain awards in 2010 was great and helped raise a lot of awareness of aspergers and autism but now I could finally get my teeth in and help to change the world for autistic people like myself.

Since I started in my role I have become actively involved in the local autism partnership who hold bi-monthly meetings working to set up a new care and support system for autistic adults in the Plymouth area. I've attended 3 meetings so far and its really good to be able to offer input from an autistic perspective so that ultimately the new strategy will benefit from understanding things from both sides of the coin so to speak.

I have been lucky enough to be featured in both my local newspaper for the NAS Christmas campaign but also on BBC radio too with David Fitzgerald on the Interactive Lunch show. It was a real pleasure to meet David and to have the chance to be a guest on the BBC and to help get the message out there more about autism and educate people about it.

I was also a guest on a local internet based radio station called Positively Autistic which is hosted by the wonderful Tracy Roberts who herself has an autistic daughter. The show is broadcast online but reaches an audience all over the world and during the show I was a guest on there were calls from America and Australia to talk to me so again it was a wonderful opportunity to spread the word and to talk about what I'm doing as an ambassador in the south west. Tracy asked if I would return to do another show sometime and I said I'd be happy to. You can find out more and listen to Positively Autistic by searching for the Positively Autistic group on Facebook or follow on twitter (@posautistic). To listen to the show and to see the programme schedule go to

Next week on the 23rd March I will be attending the autism partnership board meeting again to offer my input and make more progress. On a personal level since being an ambassador my confidence and social skills have grown and developed more so as well as helping others and getting the message out there being an ambassador has helped me. I now have a girlfriend and this is all due to my increase in confidence.

Aside from next week I am also planning to set up a charity event here in Devon to raise money for the NAS and am considering either a 50k bike ride similar to the Bristol event or a 50k charity walk. Next month of course is World Autism Awareness Day and I am looking forward to playing my part in letting the whole world know via social networking about autism.

Sadly although this is Olympic year I wont be one of the torch bearers although I was nominated but will be cheering on Kevin Healey a fellow ambassador from Staffordshire who has been chosen to be a torch bearer..........Well done Kev !!!!

Friday, 16 March 2012

What my mum means to me

Ahead of Mother's day, NAS Ambassador Robyn talks about the importance of being supported

My mum and dad really wanted a baby.

They tried many times and, in April 1986, my mum had a miscarriage. After her miscarriage, my mum continued to put on weight and went to the doctor, who told her she should go on a diet. The weight kept piling on and then she started throwing up.

She went back to the doctor and, to her surprise, discovered she was still pregnant. At 28 weeks, she went to the hospital and had a C section – I was born.

What my mum didn’t know is that she has two wombs. So after miscarrying my twin, I was still growing in her other womb, waiting to be born.

Having dealt with the loss of my twin, my mum and dad now had a critically ill baby to care for. I was in an intensive baby care unit for 10 weeks. They visited every day and had to take me back and forth for many years to come – every time I had so much as a cold.

My parents were overjoyed, and took pride and care in looking after me and meeting my needs.

But I didn't look at mum; I didn't snuggle against her when she fed me. In fact it seemed as though I was in my own world. So mum decided to play the guitar to me, and I started to pay attention. Essentially I was surrounded by a brick wall and my mum removed a brick so we could metaphorically shake hands.

As I continued with my 10 disabilities, I hit every developmental milestone vey late. I didn't talk at the right time and I signed using a special language called makaton. But my parents continued to love and accept me for the human being I was rather then the human being that perhaps someone else thought I should have been.

My parents were like warriors fighting for me. Mum learnt to use local services to my advantage, like the Nursery bus, where I could show the children how to dress up and the other activities I’d learnt about. Even though my social skills were impaired, I was able to find a place within my community.

My parents lived through me banging my head violently into the pavement; biting my arm; slamming my arm into doors; yelling; screaming; having tantrums in the supermarket. And yet they continued to love me and accept me for who I was. They continued to fight for me, putting pressure on the local education authority to meet my needs.

Finally when I was 8 a teacher took my Mum to one side. She said that, although the other children my age had behavioural problems, such as faeces smearing, biting and breaking kids arms, they were fine. But me? I was the problem.

Mum thought maybe I had autism, so I was referred to CAMHS and it took 3 years to get a diagnosis. With my new found diagnosis you would have expected my parents to be able to rest. But no! I was mainstreamed, which was a disaster. I would bite my arm, tantrum, scream yell and be very upset generally.

My parents accepted me when I walked around backwards pretending I was on film or speaking into a Dictaphone. Or shouting loudly at night on holiday to process what had happened that day. They accepted this and then decided to go camping instead.

When I moved to high school I got bullied and my parents had to explain it wasn’t my fault and fight against teachers who didn't understand. Yet they continued to love me for who I was. No matter how challenging my behaviour got.

When I was 13, I moved school and my Mum had to stop work due to ill health. So my dad was the only one going out to work and picking me up from school. But no matter how many hospital appointments my mum had, or how bad things were at school, or how much I was angry at the world and them, they still loved me and accepted me for who I was.

No matter what scenarios have happened within my life, my parents have continued to support me and be there accepting and loving me for who I was. After all this love and dedication they then had to defend themselves when the school mislabelled self harm as abuse!

I don’t know if my parents have missed out on life because they have me...
I don’t know what it would have been like if I wasn't on the spectrum…
… But I know my mum and didn't ever give up on me.

My parents’ lives were based around me. They helped me take part in every imaginable activity to find something I as good at and encouraged me to pursue it. They weren't bothered about exam results or staying in school, but were bothered that I became as independent as possible.

For me everyday I’m thankful for my Mum.

I don’t know what will happen when they die. Like 61% of parents of people on the spectrum, I’m sure my parents worry about what will happen when they die.

If I may advise from a child perspective:

1. Love and accept your kids or who they are
2. Find what they are good at and encourage them
3. Academic achievement is not the same as happiness

(I had no GCSEs and have been very successful. I travel around the world and speak nationally, most recently chairing the NAS Professionals conference. I’m only 25 - if that’s not success I don’t know what is!)


You can read my blog at

Friday, 9 March 2012

Campaigning on the PIP in Dundee

When my son, Andrew and I heard about the Autism Action Network, we immediately wanted to be part of it and get stuck in!  Crucially, we want to raise awareness of the coalition government’s plans to replace Disability Living Allowance with Personal Independence Payment or PIP in April 2013, and the serious, negative impact this could have on the estimated 34,000 Scots aged between 16 and 64 who have some form of autism.
Working with NAS, we arranged a meeting with our local Member of the Scottish Parliament (MSP), Joe Fitzpatrick. We were joined by a journalist and a photographer from our local paper. We’ve always been very active in our local community in Dundee, but approaching our MSP in our new roles as NAS Ambassadors helped give us that bit of extra clout.

We explained that Andrew has Asperger syndrome, and if he does not qualify for PIP he will be unable to continue the part-time work he loves at our local Hotel. Many people with autism are facing a similar situation to Andrew’s: compelled to seek full time employment to continue living independently, even though the nature of their condition means that working full time will have an adverse effect on their wellbeing.

Between the ages of 4 and 19, it was mistakenly thought that Andrew had mental health issues. At 19 he was finally diagnosed with Asperger syndrome, a developmental disability.  With the support of his family and the NAS Scotland, Andrew has met and overcome many of the challenges of his condition and gone on to remarkable achievements. A keen swimmer, Andrew won Gold at the 2007 Shanghai Special Olympics for the 25m butterfly event and now coaches Dundee Discovery swimming club, a local club for the disabled. He volunteers for a local hospice and is Assistant Cub Leader with the local pack. Andrew works in the hospitality industry and recently became engaged to his girlfriend of 6 years.  Like many people with autism like him, Andrew is worried that the new PIP system may prevent them from continuing their valuable contributions to their local community and living a happy, fulfilled life.

Joe Fitzpatrick MSP was open, positive and  sympathetic. He told us that his door is always open when we want to discuss our concerns on welfare reform. He is now supporting NAS in becoming part of the Scottish government’s Welfare Reform Committee. This is just Andrew’s and my first week as NAS Scotland Ambassadors. It looks like we’re off to a good start.


Wednesday, 7 March 2012

The Undiscovered Workforce

The stats for people with autism and employment aren’t good. Just 15% of adults with autism are in full-time employment. 30% aren’t in employment OR receipt of benefits. I fall into the latter category. My husband earns a lot less than the national average wage, but works enough hours for me not to be entitled to JSA. When I was in work, I was underemployed. When I apply for jobs, even unpaid work, I am frequently given the feedback that they think I might be bored in the job or that other people were a better fit for the team, but I don’t have the experience to go for jobs that are at a higher level. I can’t hide what I am like in order to fit in and lots of people don’t seem to get why I struggle with seemingly everyday things. I know that is the case for many adults with autism – as many as 79% of people with autism on out of work benefits say they want to work, but need support, and that reflects my not-on-benefits perspective too.

I had emailed my MP Rachel Reeves in the past. I had just sent her general things to do with adults with autism before, but it was time in my new role as an ambassador for the NAS to ask her for something specific. I know Rachel cares about employment, economic activity and women in work, so I wrote to her to ask for a meeting. I wanted her to know how bad the statistics are for adults with autism, and that many of us want to work but need help to get, succeed in and sustain appropriate jobs. I want employers, the local authority, HR departments, careers advisers, recruiters and prospective colleagues to understand what it is like for people with autism in work and to offer that support. I thought Rachel might be able to help me to get these people together and talk about how it is now and how it could be.

The meeting was on Friday March 2nd. I took Eleanor from the NAS with me, as I get nervous in meetings and interviews and she was able to help with all the stats and names that fly out of my head when I am talking passionately. The meeting was at a library in Leeds and we realised on arrival that our slot was only five minutes long. No pressure, then. I thought I might not get everything out, and all that would happen was that Rachel would think I was crazy and agree to think about it to get me out of the room. But the unbelievable happened, and she seemed to be as excited about it as we were. She listened to everything I had to say, made some excellent points herself and wanted to help me to get this disparate group of people together to make things happen. It IS going to happen. I am going to be part of organising something special. It was scary, and I stuttered and stumbled my way through it, but it felt great too.

My fervent hope is that this meeting is the start of something bigger. Yes, getting all the people I mentioned together to talk about this issue and how they can help in Leeds, but talk is cheap. I want attitudes to change and the support for people like me to be put in place everywhere. I want all the people connected with employment in the region to really get it and want to do something about it themselves, because 15% of people with autism in full time work when one in a hundred adults has autism, is not enough. Not just because of the current economic crisis or the idea that work provides self-worth, but because we are an interesting, exciting, diverse group of people with something unique to offer to the workplace.


End the care crisis lobby

On 6 March, Ambassadors joined thousands of campaigners from across the disability sector for a mass lobby as we demanded the Government take action to fix our underfunded social care system. 

It was a fantastic opportunity to talk about the issues directly with MPs and show how strongly we want change sooner rather than later. 

As well as meeting their MPs, Ambassadors wrote questions for a live Q&A with Paul Burstow, the Minister responsible for this area.   They were also part of the first ever Twobby (online lobby) – which enabled hundred more campaigners who couldn’t attend to still ask questions and tell their story.  As you’ll see from the video our Ambassadors were at the forefront of the photo shoot outside of Parliament which was used for successful media coverage of day. 

Thank you so much to all those who took part in the lobby and if you’ve been writing to your MP in the meantime.  If you want to get invovled then you can do so here