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
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
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 www.autism-awareness.org.uk.