P-04-492 Diagnosis of autism in children
P-04-492 Diagnosis of autism in children
We call upon the National Assembly for Wales to urge the Welsh Government to:
- ensure
timely diagnosis for children with Autism Spectrum Disorder [ASD],
regardless of where they live, so that children with autism can be
supported and lead fulfilled lives; and
- review implementation of and ensure compliance with the NICE guidelines on recognition, referral and diagnosis of children and young people on the autism spectrum as part of the Welsh Government’s refresh of its ASD Strategic Action Plan.
Supporting
information:
Diagnosing can be
a critical milestone for people with autism. For children, it can help ensure
that the right support is put in place from an early age.
Diagnosing autism
can be difficult because autism is complex condition that affects each person
in a different way. We therefore support the view that a number of different
specialists should be part of the process to ensure a correct diagnosis.
However a timely
diagnosis is vital in order to minimise anxiety and
stress for children with autism and their families. The Deputy Minister for
Social Services supports this view and in response to a question from Rebecca
Evans AM said: ‘I fully recognise the importance of
receiving a timely diagnosis.’ We also know that early intervention for
children with autism is crucial in their educational, emotional and social
development and for their longer-term health.
While there are
good examples of diagnostic and assessments services in Wales, we are very
concerned that not everyone can access a timely diagnosis and that not every
area is following the NICE guidelines on recognition, referral and diagnosis of
children and young people on the autism spectrum.
Our experience in
Pembrokeshire has been particularly difficult, with
some members of the branch waiting up to seven years for a diagnostic
assessment. This lengthy wait for diagnosis is having a huge impact on families
across Pembrokeshire.
We have tried on
several occasions to engage with Hywel Dda Local Health Board. We have also met with local AMs
Paul Davies and Angela Burns outlining our concerns. Paul Davies has written to
Hywel Dda Health Board
urging them to meet with the branch. We are still waiting for the Health Board
to act on that request.
One of the branch members has ‘waited over six
years for my one son to get a diagnosis. Now I'm waiting for the other it's
been about two years and it fills me with dread.’
We want to ensure
timely diagnosis for all children with an Autism Spectrum Disorder across Wales
so that they can be supported appropriately to lead fulfilled lives.
About autism
Autism is a lifelong developmental disability that affects the way a person
communicates with, and relates to, other people. It also affects how they make sense of the world
around them. It is a spectrum condition,
which means that, while all people with autism share three main areas of
difficulty, their condition will affect them in different ways. The three main areas of difficulty are:
- Difficulty
with social interaction. This includes recognising
and understanding other people’s feelings and managing their own. Not
understanding how to interact with other people can make it hard to form
friendships;
- Difficulty
with social communication. This includes using and understanding verbal
and non-verbal language, such as gestures, facial expressions and tone of
voice; and
- Difficulty
with social imagination. This includes the ability to understand and
predict other people’s intentions and behaviour
and to imagine situations outside of their own routine. This can be accompanied by a narrow
repetitive range of activities.
Some people with autism are able to live relatively independent lives but
others may need a lifetime of specialist support. People with autism may also
experience some form of sensory sensitivity or under-sensitivity, for example
to sounds touch, tastes, smells, light or colours.
Asperger syndrome is a form of autism.
Research has shown that 1 in 100 people have autism. By applying the 1 in
100 figure we estimate that over 30,000 people in Wales have autism. Together
with their families, they make up over 100,000 people whose lives are touched
by autism every single day.
About the NAS and
Pembrokeshire Branch
The National Autistic Society Cymru [NAS Cymru] is Wales’ only member-led charity for people
affected by autism. The National Autistic Society was founded in 1962 by a
group of parents who were passionate about ensuring a better future for their children.
In Wales, since 1994, we have been providing local support, services and
actively campaigning so that people with autism get to lead the life they
choose.
NAS Cymru believes that the right support at the
right time makes an enormous difference to the lives of those affected by
autism and we are committed to ensuring that their voices are heard.
Across Wales we
have over 900 members and 11 local branches including the one in Pembrokeshire. Launched on the 1st April 2011, the branch
is for parents of children with autism to provide a network of support for
people connected through autism living in Pembrokeshire
and surrounding areas. The branch meets on a regular basis holding formal and
informal events, as well as campaigning and fundraising locally.
Petition raised
by: National Autistic Society Pembrokeshire Branch
Date petition first considered by Committee: 18 June 2013
Number of signatures:
902
Business type: Petition
Reason considered: Senedd Business;
Status: For consideration
First published: 11/06/2013