16
Examination of witnesses
Dan Harris, Tegan Mulby, Sian Foster and Char Bailey.
Q118 The Chair: Good afternoon and welcome to this public meeting of the House of Lords Committee on the Autism Act 2009. Our chair, Baroness Rock, is joining us remotely and has asked me to chair today’s meeting on her behalf. In this evidence session, we will hear from witnesses about key barriers to enabling autistic people to find and stay in work, and effective ways to overcome those barriers.
We are delighted to be joined in person by Dan Harris, the founder and chair of Neurodiversity in Business and a director at Deloitte UK; Tegan Mulby, a young autistic employee at Positive Footprints and a former DFN Project SEARCH supported intern; and Sian Foster, the director of business development at DFN Project SEARCH. You are all very welcome.
We are also delighted to be joined remotely by Char Bailey, who has been put forward as a witness by Neurodiversity in Business, of which she is co-chair of the board. Char, you are very welcome. Thank you for joining us.
Our evidence sessions are on the record, which means they are broadcast and a written transcript is taken for subsequent publication. The list of members’ declared interests has been published on the committee’s website. Having made those introductions, I will now ask the first question. When you answer it, also introduce yourselves briefly. First of all, why is improving support for autistic people to find and stay in work so important to you? Char, can we start with you?
Char Bailey: Absolutely, thank you. I am a coach, consultant, youth mentor and speaker. I work at the intersection of queerness, neurodivergence and mental health. I am here to advocate for those who have often been overlooked, underserved and too often excluded from the conversations that directly impact our lives.
Supporting autistic people, particularly young black queer trans folk— those who are socially disadvantaged—to find and stay in work is personal for me. I have seen firsthand the untapped potential that often gets dismissed because systems were not built with neurodivergent minds in mind. I believe that work should not be about forcing people to fit into a rigid box; it should be about embracing different ways of thinking and creating. I believe that everyone deserves dignity and purpose in the workplace. I am here to be a voice for those who are often not listened to. I am really grateful to be here. Thank you.
Tegan Mulby: The main problem is a lack of guidance, clarification and that employers do not give us chances. The Government are spending money on programmes like supported internships, but they are not advertising them very well. At a local level, autistic people are not supported to raise their aspirations, and people have assumptions. Young people with autism are not given career advice and guidance to help them achieve their goals because the assumption is that they will not have a career. There are not enough entry-level roles and there is no support when people go to training.
The best way to improve the transition to employment would be for colleges to support autistic students to try work experience through supported internships and to make sure we are treated as adults. It is important that autistic people are given the chance to see, hear and feel experiences, rather than just being talked to. Undertaking a Project SEARCH supported internship with Burnley College and Calico changed my mindset to being more open and trying new things with the right support from my tutor and job coach. I was supported to feel confident in my abilities and to explore my strengths and interests.
Doing a supported internship changed my life. I am now in sustainable employment and saving money to eventually buy my own first home, at the age of 23. I have had the opportunity to speak to new people all over the world and to be the first young autistic person who has given evidence to you. I am showing people just how capable I am.
Sian Foster: Hello, I am the associate director of business development for DFN Project SEARCH, which is a national charity that supports partnerships across the UK to come together, bring their respective specialisms, work together and allow young people like Tegan to go on and thrive in seeking paid employment. That is not just about employment for today but for years to come. It is about the opportunity to create a career path for themselves.
The reason why it is so important to me is because we see time and time again the number of young people who, with additional transition time to be supported, can go on to find that they are gloriously ordinary. That is about paying their own bills and saving up for the good things in life that perhaps you and I take for granted. I was recently honoured to be accompanied by the Minister for Social Security and Disability to see a lot of those young people for whom that transition will help them to go on and have meaningful employment that leads to careers. That is why I am so supportive of supported internships, because they provide that opportunity for young people to thrive in employment.
Dan Harris: I am thrilled to be here and I am learning so much already. It is a pleasure to be with my co-panellists. I am the founder of the charity Neurodiversity in Business, which is the corporate voice for neurodiversity. I am also here with another hat on, which is that I am the father of a non-speaking autistic boy—we call him The Joshie-Man. He is known globally as someone who is advocating for the rights of non-speaking autistic children to gain access to high-technology AAC—augmentative and assisted communication—which allows them to communicate.
The Chair: Thank you, Dan. For the non-speaking autistic community, both children and adults, are there ways in which you can see things developing now that will be of help to them?
Dan Harris: What I will talk about today is truly transformative and gives us in the UK a chance to lead the world. I am very excited to talk to this.
Q119 Baroness Ritchie of Downpatrick: Thank you, Chair. My questions are to Tegan, then Char and then to others for a wrap-up. In your experience, what are the main problems with support for young autistic people in moving from education to work? What is going well and what would be the best ways to improve the move from education to work for young autistic people?
Tegan Mulby: The main problem is employers not giving autistic people clarification and having a lack of understanding. For me, I can feel overwhelmed if I am given too much information and too many tasks in the job role. This overloads my mind. My employer, Positive Footprints, took the time to get to know me and I can self-advocate what I need to bring my hard-working self to work. They are understanding when I need to change my hours to avoid busy buses, and they let me try different start times as well, to find the best one for me. They can also contact my tutor, Sarah—who is behind me here—and my job coach Maria for support.
The best way to improve support would be to trust that the autistic person can do the job well and does not need micromanagement, as this will make them more anxious. Make the autistic person feel comfortable enough to self-advocate, and listen to what they have to say. They are the experts, after all. Also, obviously, make it easier to apply to Access to Work and make the application process quicker.
Char Bailey: Tegan, that was awesome and you are awesome. The biggest barrier is a lack of understanding rooted in systemic ableism. Employers often see supporting autistic people as a tick-box exercise or one-time training event, when in reality it is about transforming the workplace culture to be genuinely inclusive. There is a gap between education and employment where autistic young people fall through. There is no real transitional support, no trauma-informed care pathways and a complete absence of representation and leadership. Employers often assume that autistic people cannot lead or collaborate, or even cannot cope. Those are assumptions based on stereotypes and not facts.
We also need to consider that there is an intersectional lens to apply here. If you are autistic and black, like me, or autistic and a lesbian like me, then the barriers are higher. In order to overcome this, we need to work, as Tegan said, with autistic people rather than on autistic people. This should be a collaborative effort because our voices are valuable and important. If we are truly heard and seen, I believe we can collaborate to make a wealth of difference.
That is what I am seeing in the work that I am doing now. As an example, I would like to reference PET-Xi Training company in Coventry, which is leading the way when it comes to connecting with autistic young people, bringing them into its workplace environment, learning from them and holding space to hear from them, rather than being the people who want to talk at them and try to mould them into being fit for the workplace. It is adapting its workplace based on the feedback from autistic young people and autistic adults like myself. If it can be done in a working-class Midlands place like Coventry, then that is something that we can recreate and amplify throughout the rest of the UK, and I am really hopeful about that. I hope that answered the question.
I just want to note, for those who can see me, that I will be stimming throughout this, and I think that should be normalised in spaces like this. If you see me fidgeting or my hands moving around, that is me grounding and regulating myself. We should normalise stimming in environments like this. Thank you for hearing me.
The Chair: Char, thank you so much. That was awesome too.
Sian Foster: One of the things we experienced an awful lot at DFN Project SEARCH is a lack of understanding about the pathways that are available: that knowledge and understanding, and that early intervention as early as primary school age, around what aspirational pathways are available to young autistic people. The second thing is around fear. To pick up on Char’s point, like Dan, I am a parent of an autistic child and it does come with an element of people—employers specifically—saying, “I am frightened of saying or doing the wrong thing”. That is where supported internships are really important in that space, because, as you can see, Tegan will advocate and talk about it from that lived experience point of view. What better way is there to learn than spending time with autistic people who can advocate for themselves and tell you what it is that they need in order to thrive?
Dan Harris: I have nothing to add.
Q120 Lord Addington: What are the main barriers to employment supporting young autistic people with the move from education to work? What should the Government, employers and others do to overcome these barriers?
Sian Foster: In terms of employers, it is very much about having a mechanism to be able to support that transition. Autistic people may need some reasonable adjustments. There is a system there to support that through things like job coaching support. That is really critical. Tegan mentioned the job coach and tutor support that she received within the workplace, and that mechanism is a critical piece of that transition.
Some of the problems that we are navigating currently as a national charity are seeing supported employment finding challenges around government interventions such as the internships works commission, which has enabled a doubling of amounts of supported internship places for young people to experience work and feel how it is. But there is a reduction in the Access to Work support that those supported employment organisations can claim—it has been reduced to 26 weeks. A standard supported internship is at least six months. Our programmes last for around a full academic year—a nine-month period. It is that challenge whereby there are support mechanisms in place to allow that process to happen but also a taking away of those offers of support in terms of the financial funding for the organisations that provide the support. It is a challenge.
It is a shame that, when we see around 15,000 more applicants to Access to Work, success is actually seen as a problem rather than a success. As you can hear, Tegan is in meaningful paid employment that is leading to a career for her. In order to continue the journey, job coaching support is critical so that autistic people can go on to a meaningful paid employment opportunity that will last them not just for here and now but for years to come.
Dan Harris: Everyone in the room agrees that the autistic community is a marginalised community. I propose that, within that community, there is a doubly marginalised community that I will talk to: the non-speaking and minimally speaking community. My life mission is to give a voice to those who do not have a voice in our society currently—and “currently” is really important, because I do think we can get this right. Some 25% to 30% of autistic children are minimally speaking or non-speaking, which means that their input is often not heard. That is not because they are not trying to communicate but rather because society is not listening. I believe it is beholden upon us to consider those voices very strongly. Over the last few days, I have run a survey and we had over 850 responses from non-speakers, from parents of non-speakers and from those professionals who support them. We found that 94% felt that their child was not having their communication needs met. Some 74% said they had never received any training or had had only one contact from a speech and language therapist. Only 17% had access to high-technology AAC.
AAC is a term that I think we all understand here. There is a differentiation. There is low tech, which is often bits of plastic, choice boards, PECS cards et cetera, which we are all used to. Gosh—we were using those in the 1960s. There is a preponderance of discrimination against non-speaking autistic people in this country that means we are not going immediately to high-tech AAC.
I will explain why that is important. We spoke to over 100 speech and language therapists, whom I will refer to as SALTs. Some 61% of SALTs—a mixture of NHS and independent practitioners—said that their AAC training was inadequate. Only 8% of those therapists rated their high-tech AAC access as adequate and only 9% said there were clear pathways in place. Funding was cited as the main reason for that.
The therapists challenged the misconception that children need to prove readiness for high-tech AAC. I know that my colleagues, and Char online, agree with me that that is fundamentally wrong. We should presume competence rather than introducing artificial constraints around how these children get access to high-tech AAC. I am happy to go deeper but I am conscious that I do not want to take too much time away from my co-panellists.
Lord Addington: As someone who uses tech himself, in a different field with different problems, I ask: is the tech at a level at the moment where it is easy to use? Is it a simple thing for somebody to use and understand? That is a barrier generally.
Dan Harris: Previously, my little boy, The Joshie-Man, was banging his head on the wall. He was very upset a lot of the time. Within a week of getting his AAC, which we call a talker—that is commonplace—he was typing on it: “I want pepperoni pizza now, daddy”. That was a beautiful expression of a non-speaker whose world had just been transformed.
We have been going around the world donating these talkers to children. We have been to LA and Mexico. We are off to Brazil next month. I have got videos from families who have said, “This is the first time my child has said ‘I love you, mum’”. Those are life-changing things.
To answer your point, the technology is here right now, today. As an individual citizen, I give away these iPads and the kids pick them up. It is not my job as a UK citizen to do that; it is the job of the UK Government.
Lord Addington: How long does it take in training to use this usefully?
Dan Harris: It varies according to the functional level of the child. But, for children for whom high-tech AAC is a route, you could see results within four to eight weeks.
Q121 The Chair: As these children grow into adults, in a workplace situation, is this not just something that will change their life but something that is for life?
Dan Harris: Absolutely—we believe communication is a fundamental human right throughout one’s life. In the transition from education into employment, the reality is that we need to make sure these children have the ability to communicate, and to access any of the great services being provided by other organisations. If they cannot, then it will not matter. If the child is disenfranchised by the education system, they will not get to employment.
The Chair: Char, do you want to say something about that?
Char Bailey: I have had amazing conversations with the Joshie-Man. Dan, as an autistic parent and carer, is a phenomenal human, but he should not have to do the work that he does. I have had conversations with so many parents who are worried about what will happen to their autistic child when they are no longer around to support them. That is something we all have a responsibility to do something about, personally and professionally. The conversations I have had with the Joshie-Man have been fantastic, uplifting and enlightening. I really want to hear more from non-speaking autistic people, and this is the way that we can do it.
The Chair: Thank you both, particularly Dan, for introducing the Joshie-Man to our inquiry. I think he will play an important part in it.
Q122 Lord Crisp: In your experience, what are the main problems with support for autistic people to be able to stay and progress in work? What is going well? What would be the best ways to improve support for autistic people to stay and progress in work?
Char Bailey: If you have met one autistic person, you have met one autistic person. There is no one-size-fits-all remedy or hat for us all. That is something that people really need to get to grips with. A fear of how to interact with an autistic person or the autistic community is absolutely valid because it is new. But that fear should not stop us from engaging completely.
If we really listen to autistic people and create spaces where they feel psychologically safe to tell us what they need, then we can get results. What has worked for me is when people have got rid of their assumptions and have not focused so much on what they need to learn but have perhaps unlearned all the stereotypes, narratives and belief systems they have about what it looks like to be autistic.
I refused to accept my autism diagnosis because I said, “I am not Rain Man. I am not Sheldon from the ‘Big Bang Theory’. I do not fit the idea of what autism is”. However, when I was able to connect with neurodivergent women—neurodivergent people—from the LGBTQIA+ community and neurodivergent people of colour, I was able to see myself reflected. When I saw that, I was able to build confidence, learn how to advocate for myself and communicate what I need to be able to feel like I can not just survive in a workplace but get ahead and have an equal opportunity and the same level of access and support as my colleagues.
It is about listening, funding and implementing transformative culture changes. It happens on an individual level, from the bottom, and from each individual person wanting to make change. But it also needs to come from the top. Employers need to embed neurodiversity into the heart of a business, not just as a side product. We need to have autistic people in leadership roles. I have had the privilege of having neurodivergent leaders shape me, mould me and be role models, and that has allowed me to feel as though I am valuable and valid to take up the spaces that I have.
We need to redesign recruitment to be inclusive by default, and reasonable adjustments should be normalised. We are not just the exception. The more that people are willing to learn about us and work with us, the more confidence and agency autistic people have.
The narrative is often about how we fix autistic people, but it needs to be about how we fix the broken system that was not designed for autistic people to thrive in the first place. As I mentioned, PET-Xi and some of the smaller organisations I see are really good at listening, including and amplifying the voices of autistic people by allowing us to codesign policy, be heard, get a seat at the table and be invited into spaces like this. It starts from the heart and then goes to the head.
Lord Crisp: Thank you very much indeed. Can I turn to you now, Tegan, and ask you the same question?
Tegan Mulby: In my experience, I have had delays in educational subjects, such as maths and English. Obviously, I am at a functional level. Most jobs require GCSEs and can involve difficult words. So, it is more delays in learning.
Sian Foster: Starting with what is going well, we engage with numerous employers who really want to support autistic people to get into paid employment. That is not in spite of the differences but because of the differences they bring to those organisations. It is something to be celebrated that more employers want to do that.
However, on things that could improve, the Government need to prioritise early intervention in encouraging educational organisations to begin that aspirational conversation with young people at an early age. We want young people to be able to say, “I want to do that thing or that thing”. We want them to aspire. That aspiration-building is a critical part of that process.
In thinking about how we advertise these pathways and make them available to autistic people so that they can aspire—we want them to be able to see these opportunities and reach for them—there is very much a space where we can be more active with parents and carers and encourage them to think aspirationally for their loved ones. Because, as parents, we have, of course, very often gone through that process of diagnosis, which can be incredibly difficult. So, there is space for us to do work with parents and carers around making sure that they feel able to allow their loved ones to reach out for those opportunities.
Char mentioned recruitment. I fundamentally agree with that. We need to challenge those recruitment processes that have been in place for years and years. It is not about continuing on because things have always been done that way. Things such as work trials are really valuable to some of the young people who have come through our programmes, because they allow them to show all the great things they can do. They might not necessarily be able to sit and tell you about that in an interview—which speaks to some of the things Dan talked about—but they can certainly show you. That is why we get so much success out of our programmes and about 70% transition into paid employment. Being able to do it in a different way works. That speaks to just flexing the system.
Lord Crisp: Can I pick you up on one point there? You said there is something around encouraging parents and relatives to be aspirational.
Sian Foster: Absolutely. I can speak from personal experience. When you go through that diagnosis process, you spend 100% of your time focusing on all the things that your loved one cannot do, because that is what diagnosis is. You look at all the things that a young person cannot do and you focus on that. As a charity, we take off those glasses, put on different glasses and say, “Actually, here is what can be achieved with the right support—with the support of specialist teams with backgrounds in SEN education, forward thinking around supported employment and who think about how you break things down into bite-sized chunks and systematically instruct them”. That system works and it allows parents to look at their loved one in a different light. It is a change from years and years of looking at all the things they cannot do to starting to see the reality of what can be achieved with the right support.
Dan Harris: I would add a note of optimism here, which is that I genuinely believe that the UK is leading the world in the prevalence and implementation of neurodiversity-at-work programmes. Of all the boards of the corporate members of Neurodiversity in Business that I have been to see, I have seen a real understanding that neurodiversity does not need to sit in the “too hard to deal with” bucket. That is where it has sat from a functional HR perspective for many years. I use the word neurodiversity there, but I am talking about autism here.
The other reality we face is that a lot of the corporates are trying to do good things but do not know what the art of the possible is. There is not a widespread industry benchmark or understanding of what “good” looks like. Char made the point about reasonable adjustments beautifully. I would countenance against that term. Who are you to tell me what is reasonable? I would say that they are readily available adjustments. UK plc needs to come together and develop a gold standard, a menu, of what should be in place as default for autistic people, and not just when they are in employment. Think about that power imbalance in the recruitment phase. That is when it is particularly needed, and it would be incredibly validating for our community if we were able to get together and define what that menu looks like, so that when people go into interviews, they are able to say, “These are the things that will allow me to demonstrate my best self”.
Tegan Mulby: In my experience, Project SEARCH has helped me a lot in helping me look for what my strengths and my interests are.
Sian Foster: Maybe I can step in. I can tell you with full disclosure that I used to be a business liaison for a Project SEARCH programme and Tegan worked alongside me within that department and did quite a lot of work with my team. One of the things she did was to look at some of the workstreams of our department and challenge me. She said, “Actually, I think things could be done a little bit different and I think you have been doing them wrong”. That is the value of people who think a little bit differently. Tegan will challenge; she will come to us and say, “We could do things a better way, and here’s how I think it could work”. People who think a little bit differently allow you to explore other options. That is one of the things Tegan offered to my department.
The Chair: It is really good that we have heard that. Tegan, I think you heard "awesome” from one of your colleagues on the panel. We are pretty awed as well. I want you to know that you are under no pressure here at all. We are all people who have not just an interest but, I hope, an understanding, and we want you to feel comfortable. So just say or do this afternoon whatever you feel comfortable with. There is no pressure at all.
I will just intervene before we go on with the questions to Sian. I put to you, Sian, something from what you just told us.
We are getting a clear and distinct message from all of you this afternoon that for employment to be successful for people on the autism spectrum, there is absolutely no reason it should not be aspirational at all. In fact, there is a duty on any of us in politics, in employment or out in the commercial world to have a better understanding of what the pathways that work look like, because I am sure I will not be the only person here in this room today who will know that it can be debilitating if you take somebody and put them on a pathway that does not work, and then you put them on another pathway that you hope will work but does not.
So when this committee makes recommendations, which we will, to the Government at the end of our deliberations, we want to be quite specific to them. We do not want to say to them, “As far as the Autism Act 2009 is concerned, this is what we think you should do” if it sounds as though it is more of the same. It is about being much more focused on what we now know and from what we have heard in this room this afternoon as to what actually works. It should be that, and that only, that we should be asking people to engage in.
I have probably asked a question that I have just given the answer to, have I not? Typical politician. But we want to get this right because since the Autism Act 2009 there have been three strategies and employment has been in every single one. So we have got to get this right. What we are hearing from all of you this afternoon is helping us crystallise in our minds the direction of travel and what we might be saying to the Government when we come to put this report together.
Sian Foster: Absolutely. That is one of the things that we see time and again and we hear it from our graduates and interns. They talk about education as a roundabout that they cannot get off. So they go around from level 1 course to level 1 course until they are maxed out so far that they have almost taken backsteps. So we need to release young people into the real-life world and experience and learn things in the way that suits them with this this collaborative approach whereby one organisation does not say, “Actually, we know it all”, because we know that no one organisation knows it all. Part of our partnership work is about acknowledging that each partner brings something different. Education brings that educational aspect of it, that SEN education background. Supported employment really focuses on the work skills and the layering on of marketable and transferable skills. Business, of course, understands what business is like and allows the interns to learn in that real-life environment. Then there is the local authority, which holds the education, health and care plan in its remit.
So, by bringing this partnership together and all working and focusing laser-like on the outcome of employment, that is what is going to make the difference for years to come. The only thing to add is that the systems that we work among do not necessarily help us. So if we look at the Disability Confident scheme, we could be looking at making things mandatory for organisations. We could look at making work trials an acknowledged process for recruitment, rather than having to talk about it. That could allow young people to show their real selves. As I said before, it is all about reforming that system so that it works, and embraces and empowers people to be able to be their real self—to come into organisations and give everything they have to give, whoever that might be, with their skills and talents that sometimes we have not focused on for many years because we have been focusing on all the things that that cannot be done. It is about that partnership, allowing people to learn in an environment and being supported by the right partnership.
Lord Crisp: The positive nature of this rather than the negative is a strong point that has come across in this. This question was aimed at not just getting into employment or getting on to the level 1 course but moving on. All of you have answered that very clearly.
Sian Foster: My only other addition is that if we look at things such as follow-along job coaching support, young people can find an employment outcome but often they will stay in job roles for three and a half times longer than their peers, which is great. But, actually, young people with autism also want to go on and progress into other employment opportunities. So, things such as follow-along job coaching, supported through access to work, really help people to go on and lead their careers. It is not just about just getting any old job; it is about getting a job that really meets somebody’s aspirations and is really going to change their life for years to come and develop into a full-blown career that will be really meaningful.
Q123 Lord Wigley: We have covered some of my question already, so perhaps I can come back with a supplementary afterwards. What are the main barriers to employers supporting autistic people to stay and progress in work? What should government, employers and others do to overcome these barriers? I was addressing perhaps to Dan to start with and then Sian, but I should be glad to hear from Tegan and Char as well.
Dan Harris: I am going to keep it focused now on the non-speaking community. As I alluded to earlier, there are various things that the Government are not doing right now that would have a disproportionate impact on that community. One of the things that we believe would have that disproportionate impact is ring-fencing local high-tech AAC funding, so that those services at the local level can rebuild after many years of lesser resources, which means capacity goes. We have to remember that this is a deeply specialist skill set. SALT is a deeply specialist skill set. If you lose that capacity, it takes a while to rebuild it. Government should be investing in workforce training to ensure that every speech and language therapist has the knowledge and ability to identify AAC needs and to act early. It is important that we do so because the reality is that time is not our friend. My co-panellists have already alluded to this. Early intervention is absolutely critical for our children, our young adults, and so forth.
The next point would be around mandating access to AAC without non-clinically appropriate prerequisite skills. I talked earlier about the fact that we should not be looking to introduce artificial constraints around when a child is ready for the AAC. We should be thinking about that maxim, “Always presume competence”. That is demonstrable by the plethora of children that I have seen who have picked up high-tech AAC extremely rapidly. Lastly, it is important that the non-speaking voice is embedded into policy development, and I am thrilled that the committee has been so forward-looking today to include that thus far. That needs to be extended across the NHS and different parts of government.
Sian Foster: There are two separate avenues that I would be eager to portray. Very often when we have young people who come through a supported internship programme, they are supported by Sarah, you know, and teams like hers to allow that confidence around the young people on the programme to be able to say, “This is who I am, this is what I need.” That is a really critical part of it. It is empowering young people to be able to say, “I am autistic and this is how I learn best. This is who I am. This is what I might be like in a situation of stress. Here’s how you might need to handle that”. So there is a power in shining a light in the dark corners around autism and being able to say, “This is who I am. This is what it looks like for me”. But often employers have a nuanced vision of what autism is and what it looks like. I think Char said it perfectly when she said, “When you have met one person with autism, you have met one person with autism”. It is critical for us to allow people to be who they are.
It is about that view of people allowing employers to see all their strengths and abilities. Do that myth-busting piece—that area where we challenge the way in which people have seen autistic people because the media is not always portraying the correct vision of what autism is.
Coming back to the Disability Confident scheme, we really do need a clear, defined set of criteria under it that will support employers to do this. It is not that employers do not want to do it; it is that, very often, they are just frightened of doing or saying the wrong thing. We can empower employers to think differently. We can empower organisations to learn. We engage with multiple employers who say, “Come and do some training for us. We want to know what it’s like. We want to know, from that lived experience point of view, what that feels like; what the best thing to do is; how we can ask questions; how we can explore; how we can understand; and, more importantly, how we can support you to be your brilliant best as our employee”. That is the other element.
Tegan Mulby: As an autistic person, the recruitment process is a huge barrier. Interviews can be really hard. Completing timed psychometric tests does not give us processing time, and the questions do not make sense. Interviews can be really hard when you are autistic. We do not get the chance to show employers just what assets we are. Work trials are much better for us to showcase what we can bring to their company. Encourage employers to work with supported internship programmes to bypass their standard recruitment process.
Char Bailey: I would like to add something on the flip side of that. Thank you, Tegan, for bringing that up. You do not have to say sorry for anything. You can be completely unapologetic; you have nothing to apologise for.
On the flip side, in my experience, my ability has sometimes been disabling in itself. We need to be aware of that. People say, “Oh, you were a high achiever in secondary school. Oh, you are articulate. You work really hard. You’ve overachieved in all of these areas”. It has almost given them a blindness to the need that I may have or the support that I might require. This is something that should be on the record and should be noted: often, autistic employees will overextend themselves and overachieve rather than being those underachievers who need support. We really need to be aware of that because the result of that is burnout, which, from my own personal experience, is awful to go through. It is about acknowledging that our ability can sometimes be disabling when it prevents people seeing how much support we might require. I just wanted to add that.
Lord Wigley: Thank you; that is very valuable. Before I pass back, can I come back to you, Dan, and possibly to you, Sian, as well? The question that goes through my mind is this: as we start thinking about the report that we will be preparing, we will be trying to get themes to run, but is it possible to generalise in these circumstances?
Dan Harris: You generalise with the greatest good intent, right? We have to start with the process of saying, “We’re going to try to generalise, but we’re going to try to pick out specific needs of different communities that need to be within that generalisation”. So, yes, I think that we have to.
Sian Foster: I agree entirely. We can generalise that we need a person-centred approach. Again, that speaks to Char’s point: we are all fundamentally different as human beings, and there is no difference with autistic people. We are all individuals. Everybody learns in different ways and has different skills, abilities, passions, talents and ways of learning. So long as we are all laser-focused on allowing that person to go on and live the gloriously ordinary, we are heading in the right direction.
Q124 Lord Hope of Craighead: Before I ask the question, can I introduce it in this way? I am going to put the question to Tegan first, then to Char; I will then come to Sian and Dan if they have anything to add. We are really looking to you for help because, as Baroness Browning explained, it is all about what we are going to say to the Government when we produce our report. You may remember that she made the point that we want to be quite specific, to be sure that the Government understand what we are saying and will actually do something. We are looking to you for help on this one.
I shall now read the question for you, Tegan. The committee plans to make recommendations to the Government about how to improve support for autistic people to find and stay in work. In your view, what should the Government prioritise? Do you feel able to answer that, Tegan?
Tegan Mulby: Of course. The Government should encourage employers to offer work trials, not just interviews. I am proof that work trials and supported internships work. I did a 12-week work placement with Positive Footprints; I was an intern at the time. I was going to go on to my final work placement before looking for jobs, but Positive Footprints managed to secure me an apprenticeship as a customer service practitioner assistant. Obviously, 18 months later, I have done it. I have the certificate, and I have managed to secure employment with Positive Footprints. That is a good example.
The Disability Confident scheme is nonsense and needs reviewing. So many companies claim to be disability confident but their recruitment process excludes autistic people. When you ask for reasonable adjustments, such as interview questions, they do not give them to you. “Disability confident” should mean something. Employers should be required to be inclusive to earn their status. English and maths should be judged on functional ability, not on GCSE results, as I mentioned before. This can be a massive barrier to autistic people seeking work.
Providing funding for follow-on support after a supported internship would help the employer and would help the young person to stay in work. Autistic people need support with inductions; if problems arise, they should be able to ask for support from follow-on job coaches. This would help autistic people sustain employment and help employers feel supported.
Char Bailey: I do not usually write notes but I have written some notes on this because I think that it is important. I am going to try to be as succinct as possible.
The Government need to centre autistic voices—not just consult but share power with us. In terms of priorities and actionable steps that can be taken, they are around co-designing employment pathways led by autistic people. I would love to see sustainable funding for neurodivergent-led organisations, because we exist and we are already doing the work, but the funding is difficult to acquire. This means that those who are already leading the charge are having barriers to access.
My third thing for employers is that they need accountability measures. Inclusion should be audited like health and safety is. Inclusion should not be something where we say, “Give us extra points because we’re also inclusive”. No—this should be the norm. It should be something that we are measured on. Employers should be held accountable for their level of inclusion.
As I mentioned, mental health support, as part of employment rights, is absolutely key because, when autistic people are overworked, the burnout can sometimes be unavoidable. But that then brings a trauma that is a barrier to autistic people regaining entry into work.
The last point I will bring into the space is not necessarily actionable, but can we reimagine what work even means? I do not believe that productivity should be measured on how well I mimic neurotypical norms or how well I can shrink myself and mask so that I can act neurotypical in order to be seen as successful. I would like to build a system where autistic people are thriving, leading and changing things on our terms, as part of a collaboration.
So codesigned employment pathways, sustainable funding, accountability measures and mental health support are the key things that should be prioritised in order to help people like me and my community gain and stay in employment. I hope that answered your question.
Lord Hope of Craighead: That is very helpful. Thank you for being so precise.
Dan Harris: That was a fantastic summary, but I have come to expect that from Char. I have three priorities, and they will not come as a surprise to the Government because I and the Joshie-Man are delivering a letter to 10 Downing Street in a couple of weeks on this very topic. The three priorities are as follows. First, high-tech AAC needs to be fully funded and supported. We as a society can no longer accept the status quo whereby we are writing off a significant part of our population at a very young age.
The second priority would be to support the NHS’s understanding that it should not be mandating artificial requirements to prove readiness for high-tech AAC. We need to make sure that the NHS understands that we should always presume competence.
The last is a cultural shift. It is Government understanding the maxim that communication is a fundamental human right, just as education is. On Lord Addington’s great point earlier, high-tech AAC is not a luxury; it is here right now. I have one in my hand—this is what my son uses. It is dead cheap. We should be getting on top of this problem.
Sian Foster: I will mention follow-along job coaching support, the Access to Work system and the Disability Confident system. It is great that we have so much good work going on in terms of finding the employment, but it is important to keep those employment opportunities going. So allowing follow-along support through job coaching, funded through Access to Work, is critical. But that also encompasses things that Dan is referring to: the systems and technologies that are out there to support anyone to find, secure and keep job roles.
On job coaching, the Access to Work support is absolutely critical. When we listen to Tegan and lots of other young people who have been through our programmes, it is about allowing that additional time to transition. We take a young person out of education and expect them to transition into paid employment, just like that. In reality, for autistic people, that transition period is a little different: it is a little longer, and they might need a little bit of support to get there. But they will get there with the right support. So Access to Work is critical, and we cannot remove it just at that transition point where they are moving out of a supported internship into paid employment. We need to keep it there because, if we do not, we are taking it away just at the point where it is absolutely imperative.
The Disability Confident scheme is there to support employers, so let us make sure that it does. Let us make sure that it holds them to account too, but let us make sure that it gives them all the tools to do this really well. The desire is there, but sometimes it just needs that little bit of extra knowledge, skill and gentle encouragement to change systems that can be archaic.
The Chair: Would anybody like to add anything before we finish?
Tegan Mulby: I would not be here today if I was close-minded because, back in college, I was very close-minded. I had headphones on all the time for music therapy. I say thank you to Project SEARCH for the invitation and obviously for getting me in the programme. Sadly, I started during Covid in 2020, but I say thank you to Sarah and Maria for allowing me to have the second year to do work placements. I am very grateful and thank all the people who supported me.
The Chair: Thank you for putting that on the record; we appreciate it. We could hear that it was heartfelt. I thank all our panellists, who have provided us with deeper insight and a lot of information that will be really valuable to us. A transcript will be sent to you to check for accuracy. This evidence session is concluded.
