GPV voices in parliamentary debate

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GPV parents contributed to a speech made by Matthew Pennycook MP in a debate in Parliament on Autism Awareness. Matthew has been a great champion of parents of disabled children in Greenwich, speaking with us regularly and looking at what may be done to improve outcomes for our children.

His speech on 28 April 2016 was part of the backbench business debate on World Autism Awareness Week. Mathew made the point that while awareness is essential, we must go further towards acceptance of people with autism in society .

He also gave GPV a great ‘shout out’ in the speech which was exciting for us to hear, especially for those parents who had made the journey to Westminster to hear the debate in the public gallery. Other MPs also gave impassioned speeches rich with stories from their own constituents and some MPs spoke movingly of autism within their own families.

Thanks to all parents who have given us so much insight and first hand accounts of what life is like for our disabled children. Your contributions, which helped shape our briefing on autism for Matthew, are influencing debate and decision making at the highest level.

You can watch Matthew’s speech in the movie clip below and read the transcript beneath.

 

“It is an absolute pleasure to follow that speech by the hon. Member for Berwick-upon- Tweed (Mrs Trevelyan), and I congratulate the right hon.Member for Chesham and Amersham (Mrs Gillan) on securing this debate and on her contribution over the years.

We have touched on autism awareness and autism understanding, but I would like to focus on something not explicitly mentioned so far—autism acceptance. As hon. Members have noted, public awareness of autism has grown dramatically in recent years, aided by a proliferation of books, media articles and not always accurate portrayals of people with autism on television and in film. This explosion of information on autistic spectrum disorders and the incorporation of individuals with autism into everyday culture has helped to familiarise people with the condition, and it is right that we celebrate that achievement.

Essential as it is, however, awareness alone has not necessarily led to greater understanding of ASDs, and it has not prevented the perpetuation of stereotypes and clichés, as even a cursory Google search would attest. Awareness alone has not keep people with autism from being abused, has not helped them find jobs and has not supported them to live independently.

In short, we will not overcome ignorance and help those with autism—young and old—to live independent and fulfilling lives simply by increasing awareness alone.

I am lucky enough to have in my constituency a fantastic organisation called Greenwich Parent Voice. It is a group of exceptional parents, some of whom are in the Public Gallery today, who came together to support each other and to fight for a better deal for their children, each of whom have special educational needs or disabilities ranging from the mild to the most profound and complex. They have not only helped to deepen my understanding of ASDs and the challenges faced by those with autism and their parents, but have made clear to me, over the course of many meetings, that what is really required is acceptance of autism.

Anyone who has sat and listened to parents or carers of children with autism or adults with autism for even a short time will know that the system in place at the moment, despite some improvements, still does not work. Whether it be through the problems in transferring from a statement to education, health and care plans, the difficulties trying to secure specialist support in the care system, or the strain of supporting children with autism into adulthood, the system causes families unimaginable levels of stress and exhaustion.”

(Ms Karen Buck (Westminster North) (Lab)

“In common with other speakers, my hon. Friend is making a very powerful speech about awareness and understanding. Does he agree—I thought his remarks were leading towards this—that we also need to translate such awareness into some hard practical action on service delivery, and that this applies whether it be about education or housing? My hon. Friend, like others, has been dealing with parents of autistic children who are forced to share rooms or to live in 10th or higher storeys in tower blocks because housing policy does not reflect the needs of autistic children. We need to build on greater awareness, but also to resource it and turn it into some practical action that will really assist people.

(Matthew Pennycook)

“My hon. Friend makes a very good point. I have dealt with allocation cases myself, and I agree that detailed policies need to be put in place that are based on recognition of the particular needs of autistic children and their families. As I have said, having to navigate the system as it stands can cause those families unimaginable stress and anxiety. Those who can grow the sharp elbows necessary to navigate the system often do so at great personal cost, and, as the hon. Member for Mid Derbyshire (Pauline Latham) said, not everyone has the ability to do that.

The range of challenges faced by those with autism and their families is vast, and this is not the debate for delving into any particular one in great detail. My sense is, however, that our collective will and readiness to do something to help people on the spectrum would be stronger if more of us were not only aware of autism and understood it, but were more accepting of it as a society. If we were, I suspect we would be compelled more urgently to address the lack of suitable childcare provision for autistic children and the fact that too many schools are still not autism-friendly and too many children are not getting the support they require. We would be compelled more urgently to address the prevalence of mental health conditions in those with autism, and the isolation that young people with autism too frequently face in school. We would be compelled to address the cliff edge in support—that is what it is—that still faces autistic people in too many parts of the country as they transition to adulthood. We would also be compelled to address the huge challenges that still face autistic adults in terms of diagnosis, employment and housing.

I have no doubt that these challenges will be overcome in time, not least because more and more people with autism and their families, such as those who helped establish Greenwich Parent Voice in my constituency, are advocating more strongly for themselves. I believe that each of us here in this Chamber and in the wider country can hasten the process by working towards a society in which more of us are not only aware of autism and understand it, but accept those with it and indeed celebrate them and their contribution—not only as family members and friends, but as classmates, colleagues and members of our communities.”

 

 

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