Tag Archives: Ambitious About Autism

What does autism mean to you? – #AutismIs

Today’s World Autism Awareness Day. Ambitious about Autism are marking the day by asking people to share what autism is to them (using #AutismIs).

Sarah Pounder, who’s written about the realities of bringing a child up with severe autistic spectrum disorder, has written a guest post for us about what autism means to her:

JamesMy son James was given an official diagnosis of Autistic Spectrum Disorder at three years old. He is severely affected by this condition. He also has a diagnosis of sensory processing disorder, Attention Deficit Hyperactivity Disorder (ADHD) and severe learning difficulties. I want to be brutally honest with you when I tell you what Autism means to me.

Autism is a long journey

Autism to me is a long journey of ups and downs, it’s been very tough, it has given me a lot of worry and heartache. James stopped waving bye when he was ten months old, he lost all imitation skills and and his eye contact was non existent. He wasn’t interested in people, he appeared to be in a world of his own. It was like he was under thick ice and I couldn’t get through to reach him. He had explosive tantrums of lashing out and he also self harmed. I had no experience of autism and even the professionals around us were no better. They couldn’t provide us with any coping strategies that worked with challenging behaviours. He was nearly five years old and he was still in nappies and he couldn’t speak.

Autism can be frightening

When you are a parent of a child with the condition of severe autism it can be a frightening experience. I have felt alone and desperate with no where to turn. I found an early intervention therapy known as Applied Behavioural Analysis (ABA therapy). The therapy left me astonished – the progress that he began to make came thick and fast. They got him out of nappies within six weeks, they did intense speech programmes that got him to talk and they even taught him how to wave bye, bye again. They also gave me sound advice and strategies to cope with James’ self harm behaviours.

Autism meant a battle for the right support

Our local education authority fought us in tribunal,they were against the therapy and thought that their preferred school could meet his needs, even though they knew that he had previously attended their school for two years and made no progress. All they wanted to do is save money. We lost in high court and he went back to the local authorities special needs school, he was there for a further three years and the progress that he made was non existent. James is eleven now and has since started in a new school in September 2014, and he currently has a full-time ABA programme, you guessed it the progress again is so apparent even in this short space a time. His language and understanding is getting better everyday, he is starting to write his name and he is really happy. His dad and I are really happy too, this therapy has given us real hope for James and his future.

Autism has made me stronger

I know that I have said some negative things about James’ autism and I want to leave you with some positive words of what autism means to me. My son has been one of my biggest teachers in life his autism has taught me a lot, he has opened my mind up to many different things and helped me grow as a person both spiritually and mentally. I feel my experience of autism has made me a better, stronger person in a lot of ways; it has taught me not to judge others, have more understanding and patience and to be more compassionate towards others.

Autism is surprising

One thing that I really want to say is this, please never give up, always have hope and do not stop until you get what your child needs. These children have great potential with the correct help and support and like James he surprises me everyday and I now feel like the possibilities are endless.

Join Ambitious about Autism for #AutismIs 2015.

Raising awareness of disability-related bullying

This week is national Anti-Bullying Week, and this year’s theme is disability-related bullying.

Research by the Institute for Education shows that disabled children are twice as likely as other children to experience persistent bullying. This can take many forms including physical abuse, name-calling and cyberbullying.

We’ve teamed up with Ambitious about Autism and the Anti-Bullying Alliance to highlight some of the issues faced by disabled children and young people.

Jack sitting on the edge of a fighting ring
Seventeen year-old MMA fighter Jack

Jack’s story

Jack is doing an apprenticeship and is also possibly the only disabled mixed martial arts fighter in the UK – but part of the reason he took up the sport was as relief from the bullying he experienced at school.

“It started in year eight. Words like ‘spastic’ were thrown around at me and those words got me into trouble at school, because I wouldn’t stand for it.

“It was hard. I don’t want any kids, disabled or not, to go through it, because it was horrible.”

Boxing training helped put things into perspective.

“Over the course of a couple of months, I realised that I just needed to chill out. There are going to be people in the world that are just idiots, they have no idea what they’re on about, they throw the word [spastic] round like it’s funny, and it’s not.

“But then, I’ve got friends and family who support me 100 percent, so I just forget about it.”

Rebecca’s story

Rebecca, a youth ambassador for Ambitious about Autism, says she faced bullying from her first years at primary school.

“I remember people saying mean things to me, and I was always left out of friendship groups because I acted differently,” she says.

“I moved schools several times to try and get away from the hate I received, but it followed me everywhere I went. On the school bus I got hit, pushed and verbally abused so I ended up having to walk, and even then the bullies followed me.

“Other students called me weird, loner, freak, fat and ugly, which was one of the hardest things. People say words don’t hurt but they do, and they can have a long-lasting negative effect.”

What to do

The Anti-Bullying Alliance has put together a list of top tips for parents who find out their child is being bullied. Here are a few of them:

  • Don’t panic. Stay calm, try to listen, and reassure them that you are there to support them, and things will get better once action is taken.
  • Try to establish the facts. It can be helpful to keep a diary of events to share with your child’s school or college.
  • Stress that the bullying is not their fault, and that you will not take any action without discussing it with them first.
  • Don’t encourage retaliation to bullying, such as violence. It’s important to avoid hitting or punching an abusive peer.
  • Discuss the situation with your child’s teacher or Head teacher – or the lead adult wherever the bullying is taking place. Every child has a right to a safe environment in which to learn and play. Schools should have a behaviour policy which sets out the measures that will be taken to prevent all forms of bullying between pupils.

And what if you’re a young person experiencing bullying? Rebecca says: “The most important advice I’d give to other young people with autism who are being bullied is to not let people bring you down.

“Don’t let them hurt you. Speak up and ensure your teachers and parents actually deal with it. It can be hard to confide in someone, but when you do it can release a lot of weight that may be on your shoulders. Bullies are just jealous of how awesome we are!”

Scope’s Trendsetters group, where young disabled people come together to discuss issues that are important to them, have created some information and resources on how to deal with bullying.                      

You can also support the anti-bullying campaign on social media by using #StopBullying4all.

 

Meet our new Director of Communications

Mark Atkinson
Mark Atkinson

Mark Atkinson, who’s currently Director of External Affairs at Ambitious about Autism, is starting as Scope’s new Director of Communications and Marketing in October.

Mark has worked at Ambitious About Autism for three and a half years where he has led the introduction and development of a new brand and identity. Before that Mark worked at the Youth Sport Trust,Citizens Advice and the Local Government Association.

Here he explains why he’s excited to be joining Scope and some of the important lessons he’s learnt in his career.

What was your big break?

I spent four years working for the Citizens Advice service and was asked to lead the charity’s response to a review of its statutory funding. It was known as a ‘zero based review’ – meaning that you start from position of the charity receiving no financial support from government and work upwards until you reach a figure where the charity could ‘function reasonably’.  There was a huge risk to the organisation and the network of bureaux. I managed to protect the money that came from Government into the Citizens Advice service by demonstrating the reach, impact and overall return on investment. It was a great campaign and I learnt a lot about how to influence, manage relationships and the importance of keeping focused. The experience helped me to get my next job at Citizens Advice – which was to lead a large communications team.

What’s one important lesson you’ve learnt?

I’m a firm believer in trusting your instincts. That’s not to say that evidence doesn’t matter because clearly it does, but I do believe that your first assessment of a situation or opportunity is often reasonably accurate.

What excites you about Scope?

I have been a long-time admirer of Scope having worked in the third sector for much of my career. The opportunity to join the organisation as it works to embed an ambitious strategy is one that could not be missed. I can’t think of a more exciting communications and marketing challenge than changing society so that disabled people have the same opportunities as everyone else. I looking forward to joining the team and supporting Scope to grow its brand and influence over the coming years.

Have you had a notable mentor?

I’ve worked with some incredibly talented people throughout my career. I learnt a great deal from Phil Swann when we worked together at the Local Government Association. He was the Director of Strategy and Communications and was the brains behind the LGA’s policy and campaigns effort. He is massively creative, thoughtful and, importantly for me, he has a great sense of humour.  Working with Phil was a real highlight of my career and, more than anything, I learnt that you have to keep resolutely focused on the end goal and not get too distracted by the tactical issues that come along.

What do you think is the biggest issue facing disabled people?

I’ve worked for a disability charity for the past three and a half years and so I know that life is really challenging for many disabled people. There is a toxic mix brewing across society which is fueled by a significant reduction in public expenditure, meaning that local services are harder than ever to access, combined with a deeply unpleasant narrative around those who rely on the welfare state for support. Disabled people and their families are disproportionately paying the price and, more than ever, Scope has a critical role to play in changing attitudes across society.

Read the press release from Scope