I secured a Westminster Hall debate to discuss how we can improve the accessibility of public buildings for people with autism today (Wednesday 31 January). MPs from across parliament all contributed to discuss ways we can ensure that all of our public spaces are truly accessible. I've posted the text of my speech below, but you can also watch the whole debate, if you prefer, by scrolling to the bottom of the page.
Thank you Mr Betts and it is a pleasure to serve you in the chair.
Mr Betts, imagine what Parliament could be like if there were less information.
Bear with me!
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.
If we redesigned the atrium of Portcullis House so that it was less of a goldfish bowl of sights and a cacophony of sounds.
If there were quiet areas where Members, staff, and members of the public, could retreat to if there was simply too much going on, and we needed to still our minds.
If we had routes through the Parliamentary estate that steer people logically from one place to the next, with predictable and straightforward signs, few distractions and gentle lighting.
If we did all of this, we would be removing many barriers to people with autism using our public space.
And would it not make a better place for all of us to run the country from?
Are these changes too much for us to contemplate? As Honourable Members are right now debating the Restoration and Renewal (R and R) of the Parliamentary estate, would it be so difficult for us to consider taking this once in a lifetime opportunity that the R and R presents, to make Parliament a place of greater sensory clarity, reducing the sensory overload, not just for people with autism, but for everyone?
Are these changes too much for custodians of other public buildings to contemplate?
Mr Betts, these changes are not too much for us. It would benefit us all to make them. It would benefit people with autism as users of public buildings, as employees within them and as potential employees.
There are now so many other organisations doing so that we no longer have any justification for not doing so in public buildings.
Mr Betts, fifteen years ago, several children with autism came into my life. Friends and family had young children on the spectrum, and my now-husband, then-partner, Kevin, started working with children with autism. I am grateful to all my friends, family and husband, and his colleagues, particularly Paulla Keen, and to my own staff member who takes a lead for autism in my team, Councillor Mike Davies, for what they have taught me about autism, and about how bringing down barriers to people with autism can help us all.
Like 99.5% of the public, as surveyed by YouGov polling in 2016, I had heard of autism. But as a person whose life has been immeasurably enriched by people with autism I am sad to learn from the National Autistic Society (NAS) report ‘Too Much Information’, also published in 2016, that only 16% of people with autism and their families think the public understands autism in any meaningful way.
The consequence of people’s lack of meaningful understanding of autism is that autistic people and their families are effectively excluded from many public spaces. Half of autistic people and their families told the NAS in the 2016 survey they sometimes don’t go out because they’re worried about the public’s reaction to their autism. 28% have been asked to leave a public space because of behaviour associated with their autism. 79% of autistic people reported feeling socially isolated.
But it does not have to be this way.
Although I am far from an expert, I am going to share with colleagues here today some of what I have learnt about autism and making public institutions accessible.
First, a definition. The International Classification of Diseases, tenth edition (ICD10) is the most commonly-used diagnostic manual in the UK.
The group of autism profiles is defined 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".
A revised edition (ICD-11) is expected in 2018 and is likely to closely align with the latest edition of the American Diagnostic and Statistical Manual (DSM). This definition includes sensory difficulties and has clearer diagnostic criteria.
When my cousin Sunitha, who lives in Chennai, India, found out her young son Ricky was on the autistic spectrum, it was not a surprise. She’d known something was not right, as Ricky was not speaking at age 3, and there were other things which meant she knew he understood social interaction in a different way to other people. It was a difficult adjustment to make at first. But I am so proud of how my Suni, her husband, her beautiful daughter Rachael and the extended family changed how they interact, with each other and with Ricky, and how they support Ricky’s interaction with the world. Their experiences in India illustrate so much of what needs to and can change in public buildings and public life here in the UK, and beyond.
Like many, but not all, people on the autistic spectrum, Ricky does not speak much, though he is no longer non-verbal. But he has outstanding skills in listening, reading and writing in several Indian languages. His lack of fluent speech, and that of many autistic people, could come across as standoffish. It might make it harder to get information about how to use a public building. Though some of his skills are way beyond most people’s, they are not typical.
Making a public building accessible therefore, needs to include giving information clearly, visually and logically, and include non-verbal means.
Like many, but not all, people on the autistic spectrum, Ricky likes routines and sometimes has trouble adjusting to changes. Some people may say at this point, well, does that make me a little bit autistic, I like routines and I don’t like change. That’s one of the myths about autism that I’ve heard, that the National Autistic Society mention on their website, that ‘we’re all a little bit autistic’. No, we’re not.
My routines help me to organise my day. Ricky’s help to prevent him from experiencing sensory overload, and help to soothe him when he does. He wants to be able to take the same route to school each day –that’s fairly straightforward. But when he goes on holiday, as he does with us when my husband, mother and I visit India, there are some experiences which are tricky for him – such as a very noisy, chaotic queue for a zoo, which we quickly left. That’s an example of something which we did to accommodate Ricky, but benefitted us all!
We have been able to enjoy holidays mostly because his amazing mum and the rest of the family are so brilliant at facilitating what Ricky needs to be comfortable – certain books, access to certain things on his mum’s phone, certain foods – and we are all pretty much in agreement about avoiding the noisy, chaotic experiences which would cause him sensory overload. We’ve all realised we like spending gentle, restful time just being together, doing familiar things. It works for me! But it also means Suni and her whole family can have a holiday.
We’ve built up to several days holiday each year because we have found places to stay, particularly the Green Hotel in Mysore, where Ricky knows what to expect and where the staff show great understanding of Ricky. They do this without, by the way, any special training, but with thoughtfulness and responding to specific requests from one of us which help him.
So, although visiting a public building will be a new experience at least for the first time, the organisation can help. They can provide information in advance on a website, or on arrival in a leaflet, with matching, visually clear and logical information, in the building itself. But also, even without training, or even an explanation of the autism, staff and colleagues can be encouraged to be accepting of different ways of communicating.
Sometimes when Ricky is experiencing sensory overload he will use repetitive movements or sounds or actions to try to bring about some order and method into a stressful situation with too much going on.
This could be profoundly misunderstood, seen as being disruptive, weird, or irritating, or even aggressive. Staff response to it may make a public building unwelcoming. Indeed, 28% of autistic people and their families told the NAS in the 2016 survey that they had been asked to leave a public space.
Some people with autism will have different ways of understanding non-verbal social information than neuro-typical people. They may be very literal in their interpretation of what someone says, so jokes or sarcasm don’t register or work in a different way. This again might be seen as weird, or irritating, or difficult and again, our responses to it can make a public building unwelcoming to people with autism, as users or as colleagues.
If people in public buildings are given clear information about autism and how it might present, what might contribute to sensory overload, how social interactions might be different with people with autism, they can learn to adjust their responses to people who behave in ways they don’t expect, to prevent unnecessary, non-physical barriers to people on the autistic spectrum being able to function comfortably in the space.
Some people’s autism will not be noticeable. You may have no idea what is going on, but this does not mean they are coping with an over-stimulating environment, or sensory overload, or disruption and noise.
Autism is a difference, not a disease. Understanding the difference will help the people who work in public buildings to make adjustments to their interpretation of people’s behaviour, or change how they present the building and the services in it, so that even if they do not know someone is autistic, the building and organisation are more accessible to autistic people.
I’ve chosen to focus on public buildings, because we should all have access to them as users and as potential employees. As employees, and as potential employees, their ability to do great work and to flourish could be even better if the building were more accessible to them. And speaking personally, 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 to people with autism bring those insights into public life, to the benefit of all.
Since launching the Autism Friendly Award in 2016, The National Autistic Society has supported over forty venues, public and profit-making, to become autism-friendly. Each took steps to improve staff understanding of autism, introduced pre-visit information; adapted their physical premises or layout; consulted with autistic people and families, and encouraged wider public awareness of autism.
With help from the NAS, over 1000 sites will be autism-friendly in 2019. They are currently working with a large banking group who alone has over 800 sites.
Clearly, there are businesses who understand that there are benefits to them to making their building autism-friendly, that they have excellent employees and potential employees as well as customers who are on the autistic spectrum. It benefits their businesses if they adopt autism-friendly practices and space.
Public buildings, and the public organisations in them, have no reason not to do the same. Local authorities can and should take a lead, but schools, health services, police and other public bodies should make the most of the help the NAS and other autism organisations can provide. In my own constituency, not only the NAS but the Bristol Autism Support Service has helped me to provide a more autism-accessible service as an MP. For example, this includes working with me to hold what we believe to be the country’s first autism-specific constituency surgery, something I strongly encourage other Honourable Members to do.
We could 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.
As Parliament goes through large scale renovation, there is an opportunity to make some of the physical changes to make the building more accessible for autistic people.
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 staff in restaurants and council buildings alike would not dream of saying ‘you’re autistic, you must leave’. But their lack of understanding could mean they react unhelpfully to what seems like odd behaviour, leading to a situation which causes them to ask the autistic person to leave, in effect because of their autism. My experience with Ricky at the Green Hotel showed me that staff in public space do not need to discriminate, however unintentionally, in this way.
Businesses and public bodies have an ‘anticipatory’ duty under the Act to make reasonable adjustments. This means thinking in advance about what autistic people might reasonably need.
In October 2017, over 5,000 restaurants, shopping centres and other venues across the UK took part in ‘Autism Hour’. For 60 minutes they took simple steps to make their premises autism-friendly. They dimmed lights, reduced noise and carried out autism-awareness activities. In my own constituency, local voluntary parents’ group SEND a Welcome, who provide mutual support and public awareness raising for families with children with special needs including autism, have encouraged many local businesses, such as the Boston Tea Party on Gloucester Road, to do similar things so that their families can use more local shops and businesses.
Mr Betts, this is so promising, and so welcome, but all public buildings should have more than autism hour. They should have autism days, months, years – they should simply be accessible to the one in a hundred people on the autistic spectrum – it’s in everyone’s interests. What’s good for people with autism is good for us all!
The findings of The National Autistic Society’s Too Much Information research suggests that these adjustments are not happening as consistently as they should be. The NAS resources can help with this, but this needs to be supported by the Government.
So as I draw to a close, I have questions to put to the Minister. I am grateful to her for the commitment I believe she has to doing better for autistic people to have their rights to public spaces.
I quote my constituent H, a young woman at a local mainstream state school. H is on the autistic spectrum and has been in touch with me about the need for greater understanding of autism. I contacted her this week about this debate and H 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. 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 that:
- What support will the Minister give to local authorities to ensure that their staff benefit from training on autism awareness, to help them to make the physical space and the atmosphere and staffing of public buildings such that people with autism and their families can use them comfortably?
- Given the high level of social isolation experienced by autistic people, will the Government ensure that there is a specific focus on making public spaces accessible to people with autism and their families, in their new strategy to tackle loneliness?
- How else will the Minister encourage more businesses and all public spaces to become autism-friendly?
- What steps will the Minister to ensure that the renovated Parliament meets the access needs of autistic people and their families?
- And finally, what steps will the Minister take to ensure that managers of public buildings and organisations are aware of their Equality Act duties in relation to autistic people? I’m talking here about schools, health centres, police stations, as well as council buildings.
Mr Betts, I asked at the start of these changes were too much for the custodians of public buildings to contemplate.
They are not.
The time to contemplate them is now.
This week in Parliament we have had the debate yesterday brought by my honourable Friend the Member for Cardiff West on autism and the criminal justice system, today the launch of the All Party Parliamentary Group on Autism report on autism and education, an enquiry ably chaired by the Honourable Members for Lewes and for Bexhill and Battle. We have the leadership shown by the Honourable Member for Chesham and Amersham, and by Mr Speaker. Many Honourable and Right Honourable Members have demonstrated great commitment to autism awareness.
One in a hundred 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, the Bristol Autism Support Service, the SEND a Welcome Parents group in Bishopston in my constituency, my assistant Mike, they and many others have all shown me that this can be done.
Not out of pity. Not because being autistic is inherently a ‘struggle’. Being autistic means seeing the world and relationships in it in a different way, it’s not a disease and many people on the autistic spectrum value their identity as neuro-diverse. We neuro-typical people too often make the struggle for autistic people. We create barriers where none are needed.
Autistic people are not asking for special pleading, or for us to feel sorry for them.
They are asking for equal rights.
They have a right to use public space.
And it’s time we made that right a reality.