People with Autism: Public Building Access

John Howell Excerpts

Wednesday 31st January 2018 Westminster Hall

[Thangam Debbonaire (Bristol West) (Lab)]

I beg to move,

That this House has considered the accessibility of public buildings for people with autism.

It is a pleasure to serve under your chairmanship, Mr Betts.

Imagine what Parliament would be like if there was less information—less information at once, anyway. Imagine if we all agreed that there could only ever be one voice speaking in our debating Chambers and Committee Rooms. I will admit that I am not completely perfect in that regard, but just imagine what that would be like. Imagine if we redesigned the atrium of Portcullis House so that it was less of a goldfish bowl of sights and cacophony of sounds. Imagine if there were quiet areas where Members, staff and members of the public could retreat if there was simply too much going on and they needed to calm their minds.

[John Howell (Henley) (Con)]

I ask the hon. Lady to give way on a point of whimsy, really. If she wants to know what it would be like to have just one voice at a time in the Chamber, she should come to the Council of Europe, where we are obliged to speak for three minutes without interruption.

[Thangam Debbonaire]

The hon. Gentleman’s intervention makes me hopeful that we might one day achieve what I desire, even though it would require a lot of self-restraint on my part.

Imagine if we had routes through the parliamentary estate that steered people logically from one place to the next with predictable and straightforward signs, few distractions and gentle lighting.

--- Later in debate ---

[Thangam Debbonaire]

I absolutely agree. Indeed, that is the top and bottom of my speech: what is good for people on the spectrum is good for us all. Private businesses and shopping centres have sometimes led the way, and public buildings need to follow suit because doing so would benefit us all.

I am sad to learn from the National Autistic Society report “Too Much Information”, which was also published in 2016, that only 16% of people with autism and their families think that the public understands autism in any meaningful way. The consequence of people’s lack of meaningful understanding is that autistic people and their families are often effectively excluded from many public spaces. Half of autistic people and their families told the NAS in that survey that they sometimes do not go out because they are worried about the public’s reaction to their autism. Some 28% have been asked to leave a public space because of behaviour associated with their autism, and 79% of autistic people reported feeling isolated. It does not have to be this way. I reiterate, along with my hon. Friends, that it is not good for anybody—people on the spectrum or the rest of us—for autistic people to feel excluded.

Although I am far from being an expert, I am going to share some of what I have learned about autism and making institutions accessible. First, I have a very technical definition, so bear with me. The “International Classification of Diseases”, 10th edition—ICD-10—is the most commonly used diagnostic manual in the UK. It defines autism profiles as:

“A group of disorders characterized by qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities. These qualitative abnormalities are a pervasive feature of the individual's functioning in all situations.”

I apologise to colleagues for using a technical definition, but over the past few months and years I have felt that sometimes people think they know what autism is but may confuse it with a mental health problem or a learning difficulty. Although some people with autism do have one or other or both, those are not defining characteristics. A revised edition of the ICD is expected this year and is likely to align closely with the latest edition of the American diagnostic and statistical manual. I refer colleagues to that definition for further information, but it includes sensory difficulties and has clearer criteria.

When my cousin Sunitha, who lives in Chennai, India, found out that her young son Ricky was on the autistic spectrum, it was not a surprise. She had known that something was not right. Ricky was not speaking at age three, and there were other things that meant she knew that he understood social interaction in a different way from other people. It was a difficult adjustment at first, but I am proud of how my cousin Suni and her family—her beautiful daughter Rachael and everyone else in it—have changed how they interact with one another and with Ricky, and how they support Ricky’s interaction with the world. Their experiences in India illustrate much of what needs to and can change in public buildings in the UK and beyond.

As with many, but not all, people on the autistic spectrum, Ricky does not speak much, although he is no longer non-verbal. He has outstanding skills in listening, reading and writing in several Indian languages, but his lack of fluent speech—and that of many autistic people—could come across as stand-offish. It might make it harder for him to get information about how to use a public building. Although some of his skills are far beyond most of us, they are not typical. Making a public building accessible needs to include giving clear information visually and logically as well as a non-verbal means of gaining that information.

Again, as with many but not all people on the spectrum, Ricky likes routines and sometimes has trouble adjusting to change. Some people may ask, “Does that make me a little bit autistic? I like routines and I don’t like change.” The National Autistic Society mentions the myth that “we’re all a bit autistic” on its website, but that is a myth about autism that I am keen to scotch—no, we are not. My routines help me to organise my day. Ricky’s help to prevent him from experiencing sensory overload and to soothe him when he does.

Ricky wants to take the same route to school each day, which is fairly straightforward, but when he goes on holiday—as he does when my mum, my husband and I visit India—some experiences can be tricky for him, such as a very noisy and chaotic queue for a zoo, which we quickly left. That is an example of something we did to accommodate Ricky but which benefited us too—I did not like the queue either.

We have been able to enjoy holidays mostly because his amazing mum and the rest of the family are brilliant at facilitating what Ricky needs to be comfortable, including certain books, access to certain things on his mum’s phone and certain foods. We are all pretty much in agreement about avoiding noisy, chaotic experiences that would cause him sensory overload. We have all realised that we like spending gentle time together doing familiar things. It works for me, and it means that Suni and the family can have a holiday.

We have built up to several days’ holiday each year because we have found certain places, such as the Green Hotel in Mysore, where Ricky knows what to expect and where the staff show great understanding, without any special training, by being thoughtful and by responding to specific requests from one of us, which can help.

Although visiting a public building for the first time could be a new and upsetting experience, an organisation can help. It can provide information in advance on a website, or on arrival in a leaflet, with matching, visually clear and logical information in the building. Even without training or an explanation of autism—I do not think the staff at the Green Hotel know what Ricky’s condition is—staff can be encouraged to accept different ways of communicating, and see them as a bonus to us all rather than a limitation.

When Ricky is experiencing sensory overload, he will sometimes use repetitive movements, sounds or actions to try to bring some order and method to a stressful situation. That could be profoundly misunderstood and seen as weird, disruptive or even aggressive. The response of staff to that behaviour in autistic people may make being in a public building unwelcoming. Indeed, in the 2016 National Autistic Society survey, 28% of autistic people and their families said that they have been asked to leave a public space, which upsets me terribly.

Some people with autism have different ways of understanding non-verbal social communication from neurotypical people. They may be very literal in their interpretation of what someone says and jokes and sarcasm may not work, or may work in a different way. Again, that may be seen as weird, irritating or difficult and our responses might make a public building unwelcoming.

If people in public buildings are given clear information about autism—how it might present and what might contribute to that sensory overload—they can learn to adjust their responses to people who behave in ways they do not expect, without necessarily knowing that that person is on the autistic spectrum. Some people’s autism will not be noticeable, and other people may have no idea what is going on, but that does not mean that they are coping with an over-stimulating environment, sensory overload, disruption or noise.

Autism is a difference, not a disease. Understanding that difference helps people who work in public buildings to make adjustments or to change how they present the building so that even if they do not know that someone is autistic, the building and organisation are more accessible.

I have chosen to focus on public buildings because we should all have access to them as users and as potential employees. The ability of people with autism to do great work and to flourish could be even better if buildings were more accessible to them. My relationships with people with autism are a privilege. Their different interpretations of the world around us are insightful and illuminating. Making public buildings more accessible would bring those insights into public life to the benefit of us all.

Since launching the autism-friendly award in 2016, the National Autistic Society has supported over 40 public and private venues to become autism-friendly. Each organisation took steps to improve staff understanding, introduced pre-visit information, adapted its premises, consulted with autistic people and their families, and encouraged wider public awareness of autism, as my hon. Friend the Member for Stretford and Urmston (Kate Green) mentioned.

With help from the NAS, over 1,000 sites will be autism-friendly in 2019. That is fantastic and it would be great for us to be one of them. The parliamentary estate already has part of the autism award, but I would like us to go further. The NAS works with a large banking group that has more than 800 sites, so clearly there are businesses that understand the benefits of making their buildings autism-friendly to their excellent employees, potential employees, and customers who are on the spectrum. It benefits business and it benefits public space.

Public buildings and the organisations in them have no reason not to do the same. Local authorities should take a lead—hence bringing the debate to the Department’s attention—but schools, health services, the police and other public bodies should make the most of what the NAS and other autism organisations can provide.

In my own constituency, the NAS and the Bristol Autism Spectrum Service helped me to provide a more autism-accessible service and worked with me to hold what we believe was the country’s first autism-specific constituency surgery. I strongly encourage other hon. Members to do the same. We can and should lead by example in this place. In summer 2017, the Houses of Parliament received the National Autistic Society’s autism-friendly award, joining the Welsh Assembly, the Scottish Parliament and Stormont, but as I walk around I can see plenty more to do.

Restoration and renewal is an opportunity. Under the Equality Act 2010, businesses and public spaces are not allowed to discriminate against an autistic person because of their disability. I am sure that staff here and in restaurants and council buildings alike would not dream of telling someone, “You’re autistic. You must leave”, but a lack of understanding could mean that they react unhelpfully to what seems like odd behaviour. That could lead to a situation that causes them to ask the autistic person to leave, in effect, because of their autism. My experience with Ricky at the Green Hotel in Mysore shows that staff in public spaces do not need to discriminate in that way, however unintentionally.

Businesses and public bodies have an anticipatory duty under the Act to make reasonable adjustments, which means thinking in advance. In October 2017, over 5,000 restaurants, shopping centres and other venues across the UK took part in autism hour, which my hon. Friend the Member for Dewsbury (Paula Sherriff) has mentioned. For 60 minutes, they took simple steps to make their premises autism-friendly by dimming lights, reducing noise and carrying out autism-awareness activities.

[John Howell]

The hon. Lady is being generous with her time. I like the stress that she puts on the information available for people with autism. Does she have any thoughts about whether building regulations for new buildings need to be changed to make them more autism-friendly? How might we physically adapt older buildings to accommodate people with autism?

[Thangam Debbonaire]

I would love building regulations to be altered to take into account what needs to happen to make buildings not only autism-friendly, but friendly to people with dementia and learning disabilities, as my hon. Friend the Member for Stretford and Urmston has said. I hope the Minister will address that important point in her remarks.

In my constituency, local voluntary parents’ group SEND a Welcome, which provides mutual support and public-awareness raising for families with children with special needs, including but not confined to autism, has encouraged many local businesses, such as the Boston Tea Party on Gloucester Road, to do similar things. That means that their families can use local shops and businesses, and it is also good for us all.

That work is so promising and so welcome, but all public buildings should have more than an autism hour. We should have autism days, months and years. In fact, we should simply be accessible to the one in 100 people on the autistic spectrum. Everyone present seems to agree that that is in everyone’s interest. What is good for people with autism is good for us all. The findings of the NAS’s “Too Much Information” research suggest that adjustments are not happening as consistently as they should be. The NAS can help, but it needs to be supported by the Government. I hope the Minister will address that.

Before I draw to a close, I have some questions for the Minister. I am grateful for the commitment that I believe she has to doing better to ensure that autistic people have the right to public spaces. My constituent, “H”, is a young woman at a local mainstream state school. She is on the autistic spectrum and has been in touch with me this week and on several previous occasions about the need for greater understanding of autism. When I contacted her about this debate, she said:

“I would like to ask the Minister whether there will be a campaign to raise autism awareness in schools. I ask this because I recently went on a trip, and became distressed with the noise levels from my fellow students on the coach.”

I know how she feels—I sometimes find that myself—but this is a real problem for students with autism. She adds:

“To prevent this happening again, I would suggest a short course for students in which to learn about the signs and symptoms of autism, and how to help someone in distress due to them.”

I add to H’s question a few others. First, what support will the Minister give to local authorities to ensure that their staff can benefit from training to help them to make the physical space, atmosphere, staffing and—as the hon. Member for Henley (John Howell) mentioned—structure of public buildings such that people with autism and their families can use them comfortably?

Secondly, given the high level of social isolation experienced by autistic people, will the Government ensure that their new strategy to tackle loneliness includes a specific focus on making public spaces accessible to people with autism and their families? Thirdly, how else will the Minister encourage more businesses and all public spaces to become autism-friendly? I recognise that business is outside her Department, but good examples can have a knock-on effect.

Fourthly, what steps will she take to ensure that the renovated Parliament meets the access needs of autistic people and their families? I strongly encourage her to consider that issue and discuss it with her colleagues in other Departments. Finally, what steps will she take to ensure that managers of public buildings and organisations are aware of their Equality Act duties in relation to autistic people? I refer to schools, health centres and police stations as well as council buildings. It would be fantastic if she talked to her colleagues about that.

I began my speech by suggesting changes and asking whether they were too much for the custodians of public buildings to contemplate. They are not—and the time to contemplate them is now. Yesterday, we had a very constructive debate in this Chamber on the treatment of adults with autism by the criminal justice system, secured by my hon. Friend the Member for Cardiff West (Kevin Brennan). Today, the all-party group on autism launched its report on autism and education, based on an inquiry chaired by the hon. Members for Lewes (Maria Caulfield) and for Bexhill and Battle (Huw Merriman). I am grateful to them for their work and to the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) for her leadership of the all- party group. I also praise Mr Speaker for his personal commitment to the issue, which shows great leadership in the place. Many right hon. and hon. Members have demonstrated great commitment to autism awareness.

One in 100 people and their families deserve these changes as a matter of right, so that they can have their equal right to use public space respected. My cousin Sunitha and her family, my husband and his colleagues, the NAS, Bristol Autism Support, the SEND a Welcome parents group in Bishopston, the shopping centres mentioned by my hon. Friends the Members for Stretford and Urmston and for Dewsbury, my assistant Mike—there are so many examples. They and so many others have shown me what can be done in publicly owned buildings, and not out of pity or because being autistic is inherently a struggle.

I really urge colleagues not to refer to autism as a struggle, because being autistic means seeing the world and relationships in it in a different way. It is not a disease. Many people on the autistic spectrum value their identity as neurodiverse. We neurotypical people too often unnecessarily make things a struggle for autistic people; we create barriers where none are needed.

Autistic people are not making special pleading or asking us to feel sorry for them. They are asking for equal rights. They have a right to use public space, and it is time we made that right a reality.