Autism Awareness Campaign - United Kingdom

AAY 2002 Ages of Autism Address
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'Ages of Autism' was the closing conference marking 2002 as Autism Awareness Year.....

The Ages of Autism Conference was held at the Royal Horticultural Halls in London

Autism - The time for action is now

Ivan Corea, Autism Awareness Campaign, 12 Dec 2002

The address by Ivan Corea at the major conference 'Ages of Autism' held at the Royal Horticultural Halls in London to mark 2002 Autism Awareness Year. The conference was organised by the Disabilties Trust and the partners of Autism Awareness Year.

Thank you for inviting me to say a few words, I am delighted to be here - the very fact that so many professionals are here in this audience bodes well for the world of autism. This journey - and I can assure you it is going to be a long one - is a journey through partnership. Joint working is absolutely crucial to autistic children and adults. There needs to be more joined up thinking and joint working across the sectors. It is great to see so many organisations who are partners of autism awareness year - it now the largest ever movement for autism in our country. Dr.Stephen Ladyman MP, Chair of the All-Party Parliamentary Group on Autism emphasised the fact that it is a movement - and it is unstoppable - it is parent pwer, people power that will spread the word across our land.

Right at the very outset Charika and I need to thank Julie Spencer Cingoz of BIBIC and the staff at BIBIC as well as Colin Headley, Chief Executive and the staff of Disabilities Trust - thank you for buying into the vision. These organisations linked hands - their actions, their commitment acted as a a catalyst for change, and change we must if we are to address the crying needs of autistic children in our country.

Change has to come from within - in the hearts and minds of our politicians - in the heart of Tony Blair, Iaian Duncan Smith, Charles Kennedy and parliamentarians of all parties , in the hearts of the professionals in education, health and professionals. The problem - is understanding. They need to understand what autism is all about, understand the complex needs of an autistic child and adult, understand the situation parents and carers are in, the angst, the heartache, the exasperation. We don't need sympathy - we need public services. The general public must also change - there needs to be more tolerance of children and people with disabilities.

Public services are still failing autistic people in Autism Awareness Year. Many have no educational support, no specialist speech therapy, no respite care. According to the NAS 1 in 5 children are being excluded from mainstream schools. Our 6 year old son Charin has also faced exclusion. Governors and headteachers need to change their hearts too. There is a big difference between a thug and an autistic child.

Lindsay Hardcastle writing in the Times Educational Supplement said they should not be held responsible for their behaviour. But quite often schools have taken to excluding children as the first resort rather than the last. Some School Governors have displayed a real lack of knowledge about autism. For some children - inclusion is the key. We need to work in partnership to see that inclusion works.

Teachers and classroom assistants need to be trained first before an autistic child or young person is placed in a mainstream school. Mainstream and special schools need more funding - more resources. We need sensory rooms in mainstream schools.

Autism is something that is not going to go away - it cannot be swept under the political carpet at national and local level. There are 520,000 autistic people in our country - some say even a million - if you add parents and carers you are looking at over 2 million voters - so ignore these people at your peril. Autistic people are voters too,. I have always maintained that there will be a massive increase in numbers - -are we ready for suc an increase. Where are the public services?

Things are getting better. There is much more awareness, more funding and we certainly need more research, long-term independent research. However we need these public services in 2002 not in 2012. I commend the DFES and the DOH who have been working on issuing guidelines on autism to schools, to health professioonals and institutions.

I must pay a tribute to Prime Minister, Tony Blair, who is the first Prime Minister in living history, ever since Kanner coined the word 'autism' in the 1940s to publicly speak about the condition inside parliament and outside Westminster.I commend the politicians who have backed Autism Awareness Year. The Scottish parliament heralded Autism Awareness Year, Linda Perham's debate in the House of Commons, Baroness Pola Uddin's debate in the the House of Lords and massive contributions from Eleanor Laing MP, Oona King MP, Dr. Stephen Ladyman MP and many more. The All Party Parliamentary Group on autism also play a crucial role in the Palace of Westminster. I would urge you to ask more questions and seek to improve things for people with autism, for parents and carers, because I can tell you life is hard for all of us. The suicide rate has risen. It is a huge struggle.

It has been a rollercoaster ride for us as a family. Charin has made significant progress thanks to his teachers and the magnificent classroom assistants. He is in a mainstream school in Buckhurst Hill he also spends a morning for a special experience at Hatton School, a special school in Woodford. Once again Charin needs specialist speech therapy, it is crucial in the life of an autistic child who has a communication disorder. Charin's statement clearly states he needs speech therapy once a week, the local LEA are trying to maintain that the 'terminology is rather vague' and attempts are being made to cut the references to speech therapy out of his statement - to cover their own backs and to fit in with cost cutting measures.

Prime Minister that is absolutely immoral. We badly need specialist speech therapy. I want to commend the marvellous campaign undertaken by the Royal College of Speech and Language Therapists on behalf of the autistic community. I would urge the RCSLT please continue to knock on the door of Alan Milburn. We are right behind you. We need qualified specialist speech therapists to help our children and adults.

LEAs and NHS Trusts must change their policies. Parents and carers also need respite care, my wife has had about 8 days of respite care. And really that's not good enough. Social Services need to re-examine the way they work and how they maintain care plans for families with autism. Mothers desperately need help and support. Charika is on call for 24 hours. It's a wonder she hasn't gone off her head.

There is a great deal of unfinished business in Autism Awareness Year. We need to take the debate further - I have called for an autism compact where employment is concerned, what happens to the child at secondary school, FE college, university, employment, what about the elderly? The debate has only just begun. The time for action on autism -is now.

We had a moment of sadness in our family - when Charin lost his grandad, Vernon who passed away on the 23rd of September. I want to pay a tribute to his love, his care, his understanding and his total support for the autism awareness campaign. Despite his frailty he was there in the House of Commons when Linda Perham launched her debate. He attended the first ever autism service at St.Paul's Cathedral, he too lobbied people. Thank you Dad for being there when I needed you. I stand here speaking to you because of the skills he passed on to me.

Charin has been our inspiration in all of this, We thank God for this wonderful life, he has a marvellous sense of humour and he still gets up to his tricks. He is up at around 4.30 or 5 a.m. in the morning and he will give us a running commentary on the programs he has watched the previous day. We wake up to shouts of 'It's a monster.' Bless him. I can tell you sleep is now a luxury for us but the whole struggle, the whole fight is worth it. Charin, one day, will be an Overcomer and he will rise above the barriers and the labels.

So where to we go from here? At the very outset I mentioned the word change - BIBIC, The Disabilities Trust and the partners of Autism Awareness Year have drawn up a manifesto of change. I would urge the Prime Minister and Her Majesty's Government - and Ministers Charles Clarke and Alan Milburn to look at this manifesto and genuinely change things for the better for for our children for our young people - for all those who are within the autism spectrum. Prime Minister I hope you will listen to these voices crying out for real, lasting change.

Thank you for listening.

For information on the manifesto for change please see