Group Newsletter - November 2002

I would like to start by offering our deepest thanks to the staff and managers at the Ridings Shopping Centre, not only for raising a whopping £700 for the WSGA but also for naming us their Charity of the Year.

Hopefully this will help us to raise a greater awareness of the needs of autistic people (and their carers) within the Wakefield area.

Which brings me nicely to my next subject i.e. the Call for Action.

Unfortunately the NAS North Eastern Region forum had to be cancelled due to reasons beyond our control, but the Call for Action still goes on.

I hope you are all actively seeking signatures so that the Wakefield group can stand proudly with the rest of the nation to declare in one voice that we will not be ignored, that autistic children and adults are just as valid as any others.

On a lighter note, however, the season of goodwill is almost upon us so please take time to consider the notice opposite.

There is also a booking form for the children’s party in this newsletter and an extremely well designed advert for the next Group outing.

Just one or two more things, please take care on Bonfire Night (most Army Surplus Stores sell ear defenders).

And finally we shall be hoping that the Christmas edition will reach you in Glorious Technicolour.

at our monthly meeting

Saturday 12^th October was a very busy day for committee members. It started at around 8am when Norma, John and Roger arrived at the shopping centre in time to set up our display stand. Also at 8 am, dry mouthed and highly nervous, I did a “live” spot on our ‘Autism Awareness Day in the Ridings’ with Radio Leeds (what an ordeal) before joining the gang back at the Ridings. Andrea was also there early and, rather later than planned, the Centre Manager presented her with a £700 cheque. This money will go towards a pantomime trip we have arranged for the New Year and, on behalf of all the group, we would like to thank everyone at the Ridings for their generous donation and help during our day.

I thought the rain seemed to keep a lot of people away in the morning but, by afternoon, Wakefield shoppers were out in force. We had many enquiries regarding our support group meetings and lots of literature on autism were taken by parents, relatives and young people. We were even approached by a teacher who had an autistic child in her class. She said she had little understanding of autism and took away various leaflets on the subject.

Later that morning I met Terry Rutherford (from Sunderland) at Westgate Station. He (like us) had planned to attend the NAS (North East) Regional Forum to be held here in Wakefield on the 12^th. With only day’s notice prior to the event, the NAS decided to cancel this meeting. Terry, who had been in regular contact with me regarding Autism-in-Mind (AIM) and their “Call for Action”, decided to still come down as I had a recording session arranged for him with Ridings FM on the Saturday morning. I was with him in the studio and I can’t praise what I heard enough. He was great! He was so articulate, explaining simply but very clearly about the “Call for Action”. He fully explained what this was, always stressing that this was in no way a political action. He said the petition was to raise awareness on a national level and that this would be presented in a quiet and peaceful way to whichever party happened to be in power.

I have enclosed a Signature Sheet and it would be nice if, through our membership, friends and associates, Wakefield could give him the support he needs by signing. The more signatures the better! I quote below from a letter I received from him. “The biggest problem we face in raising awareness of ASD and its effects on those with it and those who care for them is getting the public to listen. How do we get them to listen? We shout louder than everyone else. Who is shouting louder than us at the minute? Iraq, George Bush, the Euro, pensioners, the NHS, Asylum seekers, Michael Barrymore, the Countryside protesters etc., etc. What do they all have in common? The media are interested. How do we get the media interested in our cause? How do we turn ASD into a subject the media are interested in? WE SHOULD SHOUT LOUDER THAN THE REST. If the tour we are planning achieves what I believe it is capable of, then I reckon we can collect in excess of 10,000 signatures in support of the “Call for Action”. Imagine collecting more signatures in your area than those who turned out to vote in your last local election. What would that say to local (if not national) government? Don’t get me wrong, I don’t believe that ASD should become an election issue as such, but if enough people sign up to the Call for Action it should become an issue addressed by those seeking election to whatever position – local or national. There has been a 900% increase in the number of cases of Autism in the last 10 years, so let’s make our voice heard regarding policy for the next 10 and beyond. If I’m prepared to make the effort to travel around the UK to collect the signatures, please make the effort to make my journey worthwhile – collect signatures and raise funds for research. See you in November.”

Terry has made provisional plans to be in Wakefield 27.11.02. Local press and radio have already promised me good coverage.

Here’s hoping our members can obtain lots of signatures for Terry. Could you please hand these sheets in at the next group meeting or post them on to Norma Clayton or myself (addresses on back page).

All is calm. I’m watching my favourite ‘Thomas the Tank Engine’ video for the 240^th time, sitting on the nice cold wood block floor, wearing my nice cool top and no tickly socks. I had dry, square-shaped biscuits for breakfast. Everything is familiar. I feel fine.

What’s that? Oh no! The video has stopped – and I hadn’t seen the logo at the end of the credits! I’m beginning to feel the panic – I’m rubbing my fingers together to keep calm. What’s happening now? I’ve had to put a horribly hot coat on – the label really hurts my neck – and now I’ve got socks and shoes on: my feet feel itchy and squashed. What’s going on?

I’m in the car now – where am I going? Where is Thomas? When will I get out of here? Oh good, it’s stopped – now I can get out. Oh no: just a red light – why can’t I get out? Oh look: I can see my nursery: we must be going there. No, we didn’t stop. What’s going on?

Now I’ve got to get out of the car. I can see a VW logo: got to touch that! Ow! Now I’m in a squashy trolley and we’re going through a horrid hot gale. Help: the lights are so bright! There are colours everywhere! I can smell that horrid smell of baking bread! I want to get out of here!

I’m still stuck in this trolley. The musak’s calmed me down a bit, and I got a bag of crisps when I screamed: they taste lovely and salty. Oh look: I can see lots of bags of crisps. Let me at them! Yummy, yummy - and the bags are so crunchy to feel! I can hear someone shouting: what a funny noise….

Ow! Now I’m back in the trolley and I’ve got no crisps. I can hear a horrid squeaky sound and we’ve stopped moving. There are lots of things moving along a belt in front of me. Can I reach that bag of crisps? Oh no, now I’ve been rushed through that horrid hot gale again – and back into the car. Am I going to nursery so I can eat a nice square-shaped biscuit? Am I going to Gran’s, so I can play on the computer? Where am I going? I feel panicky. I’m flapping my hands. I want Thomas!

People with autism spectrum disorder have a different perspective on the world. ‘Neurotypical’ people have a duty to try to enter this different world and understand how to make life easier for the person with autism. Be aware of their possible sensory sensitivities. Prepare the person with autism for change – using visual means, not just the spoken word. Allow them their special interests, and use these to reward appropriate behaviour.

One Friday, some weeks ago, I was contacted by a distraught parent of an autistic child who had been unable to attend his special school since before the school holidays – due to “transport problems”. This lady had other children, including a small baby awaiting imminent surgery at a Leeds hospital. She just didn’t know what else to do. She and her family had telephoned and written to “Transport” many times, all to no avail. Her last telephone call had not been returned so, in desperation, she phoned me asking if I or the group could help in any way.

The mother also pointed out that similar problems had happened at the same time last year. She also told me that transport problems of one sort or another had been occurring every few weeks throughout the last school year – a day off here, a day off there – problems with vehicles, escorts, whatever. Obviously, this isn’t the first time I have heard such complaints and I do read the local press. I do however think it is now time that this problem was finally sorted.

Surely the highly qualified and highly paid departmental heads can get together and arrange a reliable transport service. If not, then their organisational ability must clearly be called into question. This constant inefficiency certainly wouldn’t be tolerated in the private sector.

Oh, yes, back to the story. The lady I spoke to in “Transport” was very helpful. I told her I appreciated her position and sympathised with the amount of flack she must regularly receive on behalf of her superiors. I said this particular situation was intolerable and that we would certainly go to press on this issue if it wasn’t addressed. She assured me that someone would phone back that day. Shortly after that, a very happy Mum phoned me to say that her child would be picked up on the Monday and, as I never heard to the contrary, I assume things went well.

Perhaps this particular transport problem might have been sorted out without any intervention but I suspect that this is only the tip of a very large iceberg and wonder just how many group members regularly suffer transport problems. I know that lots of parents and carers out there on the “Special Needs’ Spectrum” are similarly affected on a regular basis. Shouldn’t we all get together on this one? Has anyone any views or ideas on this subject?