Autism and Learning Disability Training: Healthcare Professionals

Cheryl Gillan Excerpts

Monday 22nd October 2018 Westminster Hall

[Mike Wood]

The hon. Lady is absolutely right. That enormous employment gap is a tragedy in terms of not only the lost opportunities for those people directly affected, but the wasted opportunities for the many employers who could be benefiting from the skills of people with autism and other learning disabilities, and for wider society, which is losing the contributions that they can make.

Finally, I will touch quickly on the issue of mental health. Autism is not a mental illness, but we know that people with autism are much more likely to be affected by many mental illnesses, particularly anxiety-related illnesses, than the general population. We need to ensure that the new framework is properly embedded across mental healthcare as well as physical healthcare, so that our mental health services can ensure that people with autism get the proper services they need. Far too often, people with autism find not only that their condition means their mental health problems are not properly diagnosed at an early stage, but that, if diagnosed, their condition can interfere with their receiving the appropriate treatment in a way that might be expected elsewhere.

We must ensure that autism is one of the four clinical priorities right across the healthcare system and that the training our healthcare professionals receive reflects that. Only then can we start to address the healthcare inequalities that we see in this country and, hopefully, try to ensure that there are fewer repeats of the terrible stories we have heard this afternoon.

[Dame Cheryl Gillan (in the Chair)]

Before I call the next speaker, I think that, without compromising the objectivity of the Chair, I should probably have put on record at the beginning of this sitting that I currently chair the all-party parliamentary group on autism, in case people have not gathered that by this stage. Secondly, I apologise for the temperature in this room, which is below what I would consider comfortable standards. We have made inquiries and unfortunately we cannot adjust the temperature unless the room is vacated and the engineers come in to look at the equipment. I apologise for that, but, unusually, if anybody wants to put on their coats, they are welcome to. I understand that some people are feeling very cold in this environment and I can only apologise.

[Jared O'Mara (Sheffield, Hallam) (Ind)]

It is interesting that you mention the temperature, Dame Cheryl, because I am the first autistic MP and a symptom of my autism is that I prefer the cold and get really irritated and anxious when it gets just above body temperature. This is perfect for me—I am wearing a T-shirt.

[Dame Cheryl Gillan (in the Chair)]

Every cloud.

[Jared O'Mara]

Yes. This is one of those circumstances where Parliament has worked out in my favour, because so far my autism has not been taken into account by Parliament.

I have asked for adjustments from the Speaker’s Office so that I can comfortably speak more in the Chamber, because with things such as shouting, when everyone is heckling, the aggression and the loud noises mean I cannot cope. I have only been to Prime Minister’s questions once because of all the shouting. A Conservative MP, who I believe was the hon. Member for Rochford and Southend East (James Duddridge), was not wearing a tie, and that adjustment was made in part with reference to me, because of my cerebral palsy. Much like Oliver, I have anxiety, cerebral palsy and autism—Oliver had those three—and on top of that I have depression.

There is something called comorbidity, which means that if someone has one disability, they are likely to get another. In the autism strategy of 2009 and its update for 2014, I cannot find the word comorbidity. It is a word that needs to be in the lexicon of Government and politics, the NHS and education. The same can be said for intersectionality, which is basically about the negative symbiosis between different marginalised groups and different factors. We need to look at that, and at how being disabled means that someone is more likely to be socioeconomically disadvantaged, including by being on benefits, unemployed or in prison.

Going off on tangents is also a quirk of my autism—I was talking about wearing a tie in Parliament and how the hon. Member for Rochford and Southend East was not wearing one. One adjustment that Mr Speaker kindly made was that I should not have to wear a tie, because my cerebral palsy and the co-ordination difficulties that I have with my autism mean that I cannot do a tie. Also, wearing a clipper tie will irritate the skin around my neck. The hon. Gentleman was not wearing a tie the first time I was at Prime Minister’s questions, and several Labour MPs behind me shouted at him, “Wear a tie, you scruff.” Imagine how much that hurt me. I turned around and looked at them and shook my head, but I may as well have been invisible.

This is not only about my treatment by Parliament but by the Labour party; for those who think Parliament has not made many adjustments or treated me right, Labour is another thing entirely. I am not talking about Labour as a whole. I am talking about the leadership and the people who run it, and the people who run the application process. I was not listened to or asked how they could help me. They made the sum total of one adjustment for me, which was to give me an office near the Chamber.

However, I am not here to talk about me. I am here to talk about Oliver. Some people say that people with autism do not have the capacity for empathy, including Simon Baron-Cohen—the cousin of the actor who played Borat—who came up with the empathising-systemising theory. That does not resonate with me, because I can systemise and empathise, and I want to be an autistic person who gives everybody a lesson in empathy. Think about Oliver. That is not just a name, but it is good that we give him a name, because disabled people are so often treated as statistics on a balance sheet—“Can we afford to spend this money on disabled people?” The key word in “disabled people” is “people”. We are people, with names.

Let us take a moment to think about Oliver. Imagine what it would have been like for him, being given that medication and being bullied and being scared, and his anxiety going through the roof. He did not know what was happening. He looked and saw his mum and dad, who were in a state, and the doctors would not listen to them. He says, “Mum and dad, help me. Help me.” Just think about what that would be like. [Interruption.] No. I am autistic. Do not do that.

Think about Oliver’s mum and dad. They have lost their son. That could have been my mum and dad. A year ago, I tried to hang myself in a hotel over the road, because people were bullying me over things that I did not understand when I was 20 or 22. They made false accusations of sexism and homophobia. They did not listen to the interviews I had done. They did not listen to me talk about how I am an intersectional feminist and about equality. They did not listen to me when I said that my local pub, where I have been going all the time for 12 years, is a gay bar.

I used homophobic words, but they were the words of the time; they were on the Eminem record that I listened to at the time. It was before November 2003— [Interruption.]

[Dame Cheryl Gillan (in the Chair)]

Order. Please try to keep on the subject of the petition.

[Jared O'Mara]

I know, but it is relevant—hold on.

[Dame Cheryl Gillan (in the Chair)]

You are giving a very powerful testimony, but I hope that you may try to confine your remarks to the subject of the petition in hand. That would be helpful to me in the Chair. Thank you.

[Jared O'Mara]

I mentioned that I go off on tangents; this is an example. Basically, there is a tendency in type 1 autistic people to mimic both the world around them and their peers, to try to fit in and not get bullied. That is what I was doing, and my bullying is an example of how people with autism are misunderstood and not listened to. It has huge parallels with what happened to Oliver and with the autistic people who my hon. Friend the Member for Cambridge (Daniel Zeichner) says have committed suicide.

I managed to stop myself—Lord knows how. It was probably because I thought of my mum and my sister and my niece and my nephew and my dad. That is probably what anchored me and brought me down off that chair—well, that and the fact that I could not climb it properly because of my cerebral palsy. That sounds like a joke, and sometimes we have to laugh at our disabilities, because it is all we have. I mastered humour and making my friends laugh, because that makes people like me. Sometimes people have to do that, because of all the bullying they get over their autism and all the misunderstandings, like those Oliver went through. Sometimes all you can do is laugh.

However, I hope that, at this juncture, people do not laugh but take a moment to reflect on what it is like for Oliver’s parents, and what it was like for Oliver at the time his life ended. I thank Oliver’s parents for bringing the petition to the Chamber, and I thank every Member here. I am being non-partisan—I am an independent Member—and I ask Members to please show the video of the debate and give copies of their speeches to their colleagues in their respective parties. I am just riffing, as Members can tell, but by showing their colleagues the video on parliamentlive.tv and giving them copies of their speeches, they can spread the word that people with autism are being misunderstood.

One fifth of the UK population are in the disability community, and a quarter of people will have mental health disabilities at some point during their lives. We are not being listened to and we are not being understood. Our parents are not being listened to. The respective experts in clinical psychology and psychiatry and medicine are not being listened to. It is time that we were listened to and what we want acted on.

It is time that the laws that are already in place, such as the autism strategy, the duty to make reasonable adjustments under the Equality Act 2010 and disability discrimination law, are acted on. Let us have full legal aid, and let us expand the definition of corporate manslaughter, because I believe that what happened to Oliver was corporate manslaughter, whether that fits with its definition in law or not.

--- Later in debate ---

[Wera Hobhouse]

I thank the hon. Gentleman for his intervention. I have said at another occasion today that the word “Parliament” comes from the French word “parler”, which means to talk, but we are also here to take action, so we must stop talking and take action. The issue of mandatory training is something that we can fix or determine here, and I very much hope that the Government will take that on board.

The urgent need for better training on autism and learning disability and the complications of the condition could not be shown more starkly than by the failings in Oliver’s case. In February, the charity Mencap launched the “Treat me well” campaign, which is aimed at transforming how the NHS treats people with a learning disability in hospital. In particular, women with a learning disability suffer disproportionately from health inequalities. We have heard the statistics today; they die on average 29 years before women in the general population, and men with a learning disability die on average 23 years before those in the general male population. That cannot be overlooked. We have also heard these figures today, but that does not matter—it will do no harm to repeat them: a YouGov survey conducted in 2017 found that nearly one quarter of the health professionals surveyed had never attended any training on learning disability, and two thirds wanted to have more training, so what are we waiting for?

Any illness or disorder that is either misdiagnosed or diagnosed late leads to far greater problems down the line. Early intervention depends on early diagnosis, and early diagnosis on training of those who come into contact with the sufferers. We are calling today for better training of healthcare professionals, which is an obvious start, but why not go even further? Let us look at the settings to which young people are exposed from an early age—namely, nurseries and schools. Given that ASD is so widespread, nursery nurses and teachers should receive at least some basic training to recognise the early warning signs. Far too little is being done. In my constituency of Bath, we have an autism board, but it rarely meets and has not even set up a work plan yet. Clearly, none of this is good enough.

ASD and learning disabilities can be successfully treated to give sufferers a full life. The earlier we diagnose the problem, the better the outcome. Many people with ASD also suffer from mental health problems, often as a consequence of not being diagnosed early enough. Let us end this tragedy. I fully support the recommendations that have been made, and I hope that we have the cross-party consensus to really do something quickly.

[Dame Cheryl Gillan (in the Chair)]

We now move to the Front-Bench spokesmen, and it gives me great pleasure to call Hannah Bardell.