Autism

Danielle Rowley Excerpts

Thursday 29th March 2018 Commons Chamber

[Mrs Trevelyan]

Thank you, Mr Deputy Speaker.

I want to discuss waiting times for diagnosis, which are getting better. In the case of my son James, we could not get any kind of diagnosis within the NHS and had to go private. There is not yet the capacity within local areas to ensure that when there is something different with a child early on, there is somewhere to go. I contend the use of language by the hon. Member for Huddersfield—it is not that there is something not right, but that there is something different, and that use of language is important. I say that as someone who has shouted at a lot of people when my son has had a meltdown and said, “If you don’t understand what’s going on, could you kindly go away and keep your opinions to yourself?” That is not normally how I phrase it when I am in a supermarket.

I want to throw something into the mix. As we move forward with so much more work going on across Departments, we might look at having a regional centre of excellence on diagnostics for children on the spectrum, so that we can ensure that wherever we are—whether in the north-east, the south-west, the north-west or Scotland—we know as MPs that we can direct people to a centre of excellence that will be able to help to identify children’s particular needs and so that we never get into the question whether this is about mental health.

Autism is a permanent, different way of being, whether for profoundly autistic children, for whom a great deal of support is required, or those at the high-functioning end of the spectrum—the Asperger’s part—who can be incredibly successful. Some of our greatest inventors and businesspeople are in that space, but if people cannot make it through the basic education system because their needs are not met early on and they fall out of it, that will not happen. Early diagnosis is so important, and I ask the Minister to think about that.

[Danielle Rowley (Midlothian) (Lab)]

Will the hon. Lady give way?

[Mrs Trevelyan]

Only if it is a brief intervention, otherwise I will get told off again.

[Danielle Rowley]

That is very generous. Does the hon. Lady agree that early diagnosis has a huge impact on families? I have a constituent who was told that her son had autism at the age of 18 months but did not secure a diagnosis until he was five years old. That had a huge impact.

[Mrs Trevelyan]

The hon. Lady is absolutely right. Not every council needs a child psychologist who is an expert in the identification of autism, but it would be great if there were one or two across the north-east, in my region, whom we knew we could always tap into. There have not been for years. The situation is getting better, but it is not good enough. We need to think more intelligently about how we provide that resource for families.

I want to talk in more detail about interventions. It is so exciting that the teacher training module will come into the system from September. Before I talk about that, I want to read from a letter sent to me by one of my constituents, a lady called Skye. I have not met her; I have knocked on her door, but there has never been anyone in. She wrote to me about her son, who is four years old and has complex needs. He attends our special school in Berwick. She says:

“Every day so many simple things in life that we all take for granted become a moment of stress, worry and concern”.

She says that could give a vast list of examples of the stresses her child undergoes every day. My heart goes out to her; I was there some 15 years ago, too. She highlights one particular issue:

“Shopping trolleys with child seats are designed for toddlers. My little/big man squeezes into this trolley with pain and distress. I have to lift him above my head because I am only a 5ft mummy.”

Those are the sort of practical things that day-to-day life can throw at mums who are having to deal with this. She goes on to say that

“many younger autism sufferers…have no boundaries, no understanding of the consequence of their actions, and if they have a crisis moment could injure themselves”

by falling out of the trolley or running away. I lost James once in a supermarket, and it was possibly the worst half-hour of my life. She says:

“Being confined to a safe space (trolley seat) is safer for them. It provides an object reference”,

as well as security, as a pram does for a much smaller child. That is a really interesting challenge to us, to think about how we might encourage the tools that can help a family in those public spaces where we go every week.

I almost never took James shopping until recently, as part of our plastics challenge, which I am sure the Minister will join us in. We went shopping and I said, “I’m not buying plastics.” He wanted a particular cheese that only came wrapped in plastic, so he had to buy it himself. There is a lesson for an 18-year-old boy who has never been shopping before: he gets taken shopping, and his mother then makes him do his own shopping.

The reality is that the tools to help people get over the crisis points are vital. I really hope that as the autism module rolls out, teachers are given those tools. James had an amazing teacher when he was six years old. He was not diagnosed, but she could see his meltdowns coming. She told me to bring a beanbag into school, which she put behind her desk. She said to James that whenever it all got too much for him—which was quite often, when somebody was prodding him, he was sitting in the wrong place or he could not see or hear—he was allowed to get up and leave his desk or wherever he was and go and sit in the beanbag behind the desk. The teacher knew where he was, because that is where he always went. The other children did not know or care; they carried on with their school activities. It gave him a safe place that was invisible to everybody else, but they knew he was safe, and then the moment passed.

This is a child who got three A-levels last year and is going to Newcastle to read zoology in September, but when he was seven or eight years old and undiagnosed, nobody thought he would be mainstreamed. He was mainstreamed because teachers thought about how they might give him the tools to get around those moments. We need the teacher training framework to think about the practicalities. These children are simply different, and we have to understand what not being neurotypical means. It is hard for those of us who are neurotypical to understand it.

We must give teachers the opportunity to ask questions. For many teachers in busy classrooms, if one or two children are struggling, the exclusion line is the one that is followed. The behavioural problem kicks in because the child is under a great deal of stress, entirely unnecessarily, and we find those children suffering huge long-term educational failure as a result of the teacher’s inability to intervene early on with something quite simple that can give the child time to recover.