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.
