World Autism Awareness Week

Fiona Bruce Excerpts

Thursday 28th April 2016 Commons Chamber

[Fiona Bruce (Congleton) (Con)]

It is said that a society is judged by the way it treats its most vulnerable. Among our most vulnerable are children with special educational needs, including those on the autism spectrum. I therefore want to give a voice to just a few of the many parents who have come to me over the past six years, including the Middlewich parents and carers support group, to describe their challenges in trying to get appropriate support for their autistic children. The situation is described by far too many with these words:

“every day feels like a fight.”

Time prevents me from quoting all the material I have available to describe their struggles of seeking often inadequate, slow or no diagnoses; of insufficient teacher training; of a feeling as parents that they have little voice or are inadequate, or worse, not believed; of struggles with bureaucracy, with too many different organisations; of, as one said, being pushed from pillar to post; of funding and resource frustrations; and of being, as another said,

“at a loss as to what to do.”

We need to do better for them.

One says:

“We have two children who have autism and face huge challenges getting the understanding and support they need.”

Another says,

“teachers in my child’s school in charge of special educational needs do not have sufficiently specialised training.”

Another says:

“Teachers are given…very little training. Many teachers have had only half a day’s training to cover all SEN.”

One said that more training is needed so teachers can help older children in secondary school to understand themselves when there may be an onset of distress and how to get help early. Another said:

“my son has had difficulties in school, and what hasn’t helped is that…the educational psychologist and the school, I am being told I should not say he is autistic spectrum…rather…he is a ‘complex child with complex needs’. The letter from the community paediatrician does say he has a diagnosis of ASD”.

One mother, like a number of parents, says:

“all the experts in the field of ASD would tell you that children can hold in their anxieties and control their behaviour at school, in order to ‘fit in’; but when they come home to an environment where they can be themselves, they act completely differently.”

Another said:

“I had three uniforms for him. These were all ripped when he returned home due to what had gone on during the day.”

Yet doctors often listen more to the opinion of teachers than parents. Another parent said that parents are made to feel that they are not believed—that they are

“bad parents and trouble makers. Yet what parents would want to go to so much effort to ‘pretend’ that their child has a disability?”

Another said that, as we have heard:

“The diagnosis process is not working…waiting times for diagnosis are too long…some children are being deliberated over for too long or even discharged, when there is clearly an issue which requires diagnosis.”

Another said that too much attention is paid to the opinion of teachers and not enough to parents. One mother told me she has spent three years trying to get her son statemented, but because they did not have a statement they could not get any support at primary school because money comes with the statement. He is now 12, at senior school, and has ASD as diagnosed by a paediatrician but is still not statemented.

[Tom Elliott]

One line from one of the parents the hon. Lady has mentioned has captured what this debate is about:

“every day feels like a fight.”

We have talked about this for so long. Surely there should be more progress to try to get more co-operation between the statutory agencies and Government Departments to ensure that every day is not a fight for parents and for those affected.

[Fiona Bruce]

The hon. Gentleman is correct. As long ago as 2009, following the Autism Act 2009, the Department for Health published an autism strategy that focused on five core areas of activity, one of which was the importance of

“developing a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a personalised needs assessment.”

That was for adults. How much more important is it that this happens for children, and at the earliest possible age and stage? Waiting times for assessment should follow the NICE guidelines of three months. That is a long time in a childhood; three years is an eternity.

One parent wrote that when diagnosis occurs there needs to be a greater understanding of the different ways in which autism presents itself between girls and boys. She said that

“there is not enough knowledge about girls on the spectrum...It is now recognised there are far more girls with ASD than previously thought. Girls develop the ability to mask their condition much more effectively. However, this knowledge is not being passed through the system. Far more training is needed for…professionals in the field, to ensure that our girls get equal access to assessment and diagnosis...my son was diagnosed locally by the paediatrician, yet the same doctor had quite evidently decided my daughter was not on the spectrum, without really investigating the possibility...So I had to take my daughter privately to a psychologist who was much more well informed...this needs to be addressed…we are doing our girls a disservice at present.”

Another said that autism is a spectrum of conditions and every one requires an individual solution, particularly as autism can be accompanied by another condition. As we have heard, a further problem arises when, as parents tell me, their child reaches late teens and falls between child and adult care. One mother told me that children with autism have an adolescence lasting 10 years longer than anyone else, but at 16 to 18 schools and colleges stop talking to you, but your child still needs support for a very long time. Another said:

“there are so many stumbling blocks on the way”

that it is no wonder that some of the children end up in the juvenile justice system, or self-harm.

Then there is the problem of employment. A mother told me of the struggles she is having trying to find employment for her son with mild Asperger’s syndrome. There is no support available and there are huge levels of ignorance among potential employers.

Given the right help, appropriate support can be really effective. Surely, we want for every child, including those with autism, the best start in life, and it can be achieved.