Anonymous 55 – Written Evidence (AAC0356)

1         Executive Summary

1.1            In this evidence, I respond mainly to four areas of the 2021-2026 Autism Strategy: Improving understanding and acceptance of autism within society (Section 2), Improving autistic children and young people’s access to education and supporting positive transitions into adulthood (Section 3), Supporting more autistic people into employment (Section 4) and Tackling health and care inequalities for autistic people (Section 5). Extra comments can be found in Section 6. Each section ends with the suggestions introduced in that section.

1.2            Autism awareness has improved significantly in the last ten years, and the understanding and support shared amongst the neurodivergent community has been frankly revolutionary. However, the low level of autism awareness still contributes to negative experiences in wider society, in higher education and in healthcare settings. Negative autistic stereotypes still include infantilisation and regularly result in dismissal and invalidation of both my experiences and the experiences of students. These factors, along with the perceived stigma of autism, make it difficult to work collaboratively to reduce occupational barriers or treat health conditions. In healthcare settings, the lack of general autism awareness is exacerbated by the limited knowledge of autistic bodies and brains; healthcare inequalities are by no means limited to waiting for an autism diagnosis and to social and communication access barriers. Unsurprisingly, in all areas of this evidence I suggest increased understanding of autism, with a focus on the hidden internal experience to explain why autistic adults may request accommodations.

1.3            As a result of the lack of autism awareness, I experience a significant burden to educate colleagues, managers, peers, the public and healthcare professionals in order to advocate for myself, even though I am self-taught in this area. This burden of education is required for work, home and healthcare settings, taking a significant amount of my limited capacity. Whilst I now work part time, my home life and ability to advocate for my health still suffer as a result of the effort taken to navigate work. I find that my ability to advocate for myself is hampered by additional communication and social barriers, as I fail to identify and navigate the necessary social structures. Research shows that this difficulty to advocate for myself in overcoming sensory and communication barriers is shared by undergraduate autistic students, who do not know who to talk to or what to ask for, with or without a diagnosis. Just like those students, I can find that very small changes make a large difference to my ability to take part in daily life; unfortunately, just like the students, some agreed adjustments do not realise in practice and the burden of advocating for them (typically by convincing enough people that they are “deserved”) falls on me. Whilst these adjustments should be implemented according to legislation, in reality the bulk of the effort to obtain them is on the individual. We could be empowered to advocate for ourselves by clarifying the process of doing so or having someone to advise us on this process.

1.4            Understanding and reducing the stigma of autism would make self-advocacy easier by normalising more collaborative conversations. For example, requesting a neurodivergent-aware GP and longer sessions has enabled me to finally begin treating a backlog of chronic conditions that have historically been dismissed. This does not, however help me chase up my autism diagnosis, as I must use phone calls. My difficulties with phone calls, combined with my difficulty in successfully advocating for myself generally, means that I have spent the time when I most needed help (i.e. since I finally asked for a diagnosis) indefinitely on hold. Pre-diagnosis support would help, such as examples of accommodations to ask for and more appropriate intermediate healthcare such as occupational therapy or appropriate therapies.

1.5            Finally, in healthcare and beyond, sensory challenges and enforced specific communication styles prevent my full participation in everyday life. The sensory environment could be easily built in from the start by including varied spaces and baseline (i.e. lower threshold) sensory standards. Perhaps these could be set by policy.

Table of Contents

1              Executive Summary

2              Understanding and acceptance of autism in society has improved but is still dominated by damaging narratives.

3              Autistic university students I have taught would benefit from clearer expectations and proactive support plans.

4              Navigating reasonable adjustments in the workplace is costly and ineffective.

5              Desperately needed healthcare is difficult to access, and awareness of autism-specific health outcomes is extremely limited.

6              Additional Evidence

7              Conclusion

2         Understanding and acceptance of autism in society has improved but is still dominated by damaging narratives.

This section corresponds to the strategy item Improving understanding and acceptance of autism within society and is based on personal experience.

2.1            I feel that awareness about autism has generally improved. There is some understanding that not all autistic people are young, poorly behaved white boys whenever I discuss autism with new people. Whilst understanding of symptoms and challenges are still dominated by narratives originating with this archetype, the narratives shared within the neurodivergent community can be extremely affirming and validating, for example the Daisy Chain charity shop[1] has a selection of personal statements around their store to highlight all aspects of the autistic experience. I tend to find that tourist attractions aimed at families and children are more understanding than those aimed at adults (for example, allowing me to wait elsewhere while friends queue).

2.2            Understanding and awareness of autism among healthcare professionals still feels stigmatised and non-constructive. For example, I am still reluctant to disclose potential autism to healthcare practitioners unless I am having sensory issues because I feel infantilised. I still have as many miscommunications as without disclosure, but of a different type. For example, discussions such as side effects seem dumbed down, ill health such as arm pains are misattributed to anxiety and other unexplainable symptoms are more likely to be ignored. I feel I have a greater difficulty communicating if I disclose because the sense that we can work together on my health is reduced. This effect can be countered by building up a working relationship, but this is of course not possible for trips to, for example, A&E. Pre-diagnosis support feels as if autism is viewed treated primarily as a mental health disorder as only mental health support was offered to me while I wait, instead of recommending resources for me or my workplace, or occupational therapy. Professionals who work with autistic adults should be trained to focus on collaborative, rather than paternalistic, relationship styles.

2.3            The general public’s understanding of autism is still very negative. There seems to be a general view that autistic adults are intellectually impaired, unable to make decisions for themselves and should be pitied. I have not watched “Love on The Spectrum” but I understand it has an infantilising tone which very much matches my experience of disclosure. On the other hand, I regularly overhear conversations indicating that if a person has no clear difficulties, they cannot be autistic and that they are contributing to “overdiagnosis” and “getting special treatment”. This contradictory narrative of infantilising autistic adults if they request adjustments or dismissing them if they do not arises, I think, from a lack of understanding of the distressing internal experiences central to autism. The internal experience of autism should be a focus in future awareness campaigns.

2.4            Widespread but shallow understanding can lead to a harmful false sense of security because autistic behaviours are still penalised. Some communities have made me feel safe enough to be myself and unmask; but then it becomes difficult to resume masking. In general, I try not mask unnecessarily in order to normalise neurodivergent behaviour. However, this can leave me unexpectedly unsafe. For example, I have been verbally harassed by train station staff for not making enough eye contact or conversation at ticket barriers. In addition to requiring recovery time and missing much of that work conference, experiences like this discourage me from future work trips. The cost of mentally preparing for the uncertainty of safety is almost as high as being in an intensive environment, because so many places are still reliably unsafe. Strategies for autism awareness and understanding should be continued and businesses with an internet presence should be encouraged to add any good practice to an accessibility statement to demonstrate that it is safe. Strategies here could also be taken from LGBTQIA+ allyship initiatives.

2.5           Summary of changes that would help people like me:

a)    Collaborative approaches to discussing autism should be normalised to work out adjustments, healthcare etc. For example, normalise asking “Before we start, are you comfortable here?” or “Is there anything that will help you access the process more fully?”

b)    Destigmatise autism. Currently, one must overcome the stigma in any conversation about autism. The effort of overcoming this can be so high that conversations about adjustments and needs are not cost-effective.

c)     I do not fully understand the sources of this stigma but autism should also be disentangled from infantilising narratives that automatically disempower autistic individuals. (I appreciate that some people need significantly more support than others)

d)    Highlight that autism has been historically underdiagnosed, especially in certain populations.

e)    Highlight the internal experience of autism and humanise autistic archetypes.

f)      Increase awareness of needs of autistic adults who do not have or need carers.

g)    Autistic behaviour should be normalised; or more accurately, differences in behaviour should be normalised.

h)    Encourage businesses to think about accessibility for adults, e.g. including accessibility statements on webpages. Consider adopting strategies from LGBTQIA+ initiatives to build up safe spaces.

3         Autistic university students I have taught would benefit from clearer expectations and proactive support plans.

This section corresponds to the strategy item Improving autistic children and young people’s access to education and supporting positive transitions into adulthood, specifically into higher education, and is based on personal experience and some research literature.

3.1            Many students are obtaining support at higher education level. A lot of people who seem to get missed at school gain diagnoses (e.g. through educational psychologists) at university. The student support plans are quite general and not always tailored to the needs of each student. Alternatively, some students will only disclose in private to select, “safe” members of staff. In both cases, I have seen students flourish at the opportunity to work even slightly differently; small changes by a few members of staff can make a big difference[2].

3.2            Support plans are not always well implemented. Unfortunately, this must be done by each lecturer, often depending on whether that lecturer believes those adjustments are “deserved” or not.[3] This is likely to still be true of other institutions rather than solely those I have close links to[4]. The burden of advocating for the supports often falls on the students2. Support should be proactive because autistic students don’t know who to talk to and what to ask for[5].

3.3            The expert-in-the-room method of teaching makes it particularly difficult for autistic students to take charge of their learning. I feel that part of the difficulty in accessing higher education is the cultural framework behind higher education. Having an expert at the front of the room lecturing teaches students to silently observe and not take part, whereas an implicit goal of university is to develop independent learning skills and the ability to make and carry through personal plans. This seems to be more strongly internalised by students with an autism diagnosis, who require more support and attention before they can engage in discussions or activities (personal experience).

3.4            The expectations of students at university are unclear. For example, the overarching goals of university education are unclear, as are the skills one must develop to achieve these (e.g. to take charge of their learning, to manage their time, to initiate contact with lecturers if they don’t understand and to recognise the limits of their understanding). These are all problems shared with first-generation students so addressing these would likely benefit all students.

3.5            Autistic students are equally likely to have strategic career goals.[6] However, these are likely to be narrower and more focused on a specific profession, and autistic students are also less likely to engage with as many new experiences at university. Similarly, women engineers take longer to reach career goals than their male counterparts because they are comparatively under-resourced when envisaging how to reach those goals[7]. I do not know of a wider scale study than this one, or one for autistic students, but as a minority who try fewer new university experiences yet have narrower goals, autistic students could be offered support to strategically plan their futures.

3.6            Summary of changes that would support autistic students:

a)    Proactive support to autistic students.

b)    Clear methods for students to advocate for their adjustments. Learning to self-advocate has additional benefits when transitioning out of university6.

c)     Make clear the implicit expectations and goals of university to all students.

d)    Strategic career support for autistic students.

e)    Students want better awareness from staff, who they currently don’t trust to support them. They also want awareness from peers, mental health counselling, academic support, communication support and networking opportunities.[8]

4         Navigating reasonable adjustments in the workplace is costly and ineffective.

This section corresponds to the strategy item Supporting more autistic people into employment and is based on personal experience.

4.1            Not having a diagnosis makes it very difficult to advocate for myself in the workplace. There are many areas in which I know I struggle in the workplace, but without a diagnosis, it is difficult to know what reasonable adjustments to request. Online examples are too vague to help me and I don’t know what changes I could reasonably ask for in my profession. I must spend significant amounts of time working these out. Easier access to a diagnosis and pre-diagnosis examples of adjustments would both help.

4.2            There is a significant burden of self-advocacy and education about autism that falls on me and limits the adjustments I can obtain. At work, I only ask for what I think I can get, not what I need; I am limited by what other people think is reasonable in my workplace. I must spend my effort managing what I can personally, working out what I need, working out who to talk to and what institutional structures to navigate, convincing people what my internal experience is, then coming up with reasonable adjustments. The burden of identifying and implementing changes and educating my colleagues falls solely on me. I do not get credit for this and will be penalised in career progression as I have spent less time on my work, even while some of my colleagues think I am deliberately obstructive. Better autism awareness would help me significantly.

4.3            My requests for adjustments are limited by the social stigma of autism. The example in the previous paragraph is focused on obtaining adjustments for sensory challenges rather than my other difficulties with flexibility and social communication. This is because there are fewer resources to enable me to understand my needs and because sensory challenges are more socially acceptable to admit to. For example, I have noticed that if I admit to being autistic, people are dismissive or patronising, whereas if I list my challenges separately (e.g. paying attention in noisy areas, missing implicit messages, longer times required to switch tasks, missing some words in sentences, sensory overwhelm etc) people are much more supportive – even if I list all the challenges typically associated with autism. Again, awareness of autism would help here - but I also believe research into the source of the stigma will be needed.

4.4            I do not know how to advocate effectively for myself when adjustments are not working; I encounter additional social and communication barriers. For example, I tend to find that simple adjustments such as written instructions, sensory accommodations etc are agreed in principle then completely ignored. I do not know what institutional or external structures exist to help that would be worth the energy input required. So far, I have contacted my line manager, union and university EDI team. All seem supportive yet changes don’t seem to happen. This is unfortunately very similar to the experiences of autistic university students who dropped out of study and identified a lack of proactive support as a factor5. My ability to implement these is further limited by my ability to navigate social structures; for me this is a double penalty as I approach things either too bluntly or too indirectly, either way antagonising my peers. Even failing to communicate effectively has a large emotional and energy cost for me. I am often told to complain. But to who? What am I trying to achieve? How many people will I need to navigate, and do I have the energy for that? Clear pathways to advocate for my adjustments, and someone to help me navigate this process, would help significantly. 

4.5            There is an assumption that people like me wouldn’t be in a professional setting, therefore adjustments we make for students are not needed for staff. For example, a colleague said that “we don’t need to bother with worrying about dyslexia because no-one would have got this far”. I have encountered similar sentiments with other small adjustments such as making meeting agendas, sharing presentation slides and minutes. In the last year we have managed to sporadically improve things because we have a PhD student with a support plan. But this is very dependent on the member of staff, and the same courtesy is not extended to neurodivergent members of staff.

4.6            The sensory environment is a significant, unaddressed barrier to me to be in work. It is exhausting to get to and be in the office. Lack of a variety of spaces mean that I am generally expected to have meetings in rooms that other people are also meeting in; in this case the background noise tires me out while I find it hard to focus on student words. When lecturing, the background noise can make it difficult to speak in complete sentences, but I do not feel I can request specific rooms because it was so exhausting to get my consecutive teaching hours limited. I lose out on opportunities to make connections with colleagues due to a lack of suitable conversation spaces. The university is considering moving to open plan desks and hotdesking; based on previous experience, I have no confidence that any adjustments will be made for me. Meanwhile, I am anxious about the potential move. Nevertheless, sensory challenges are those most easy to discuss. There are also good resources for building design, or cheap adaptations, that include both details and quick checklists, that should be enforced as standard.[9] [10] [11] [12] [13] Many are good adaptations for all staff, as well as being no more expensive than other options if included from the start.

4.7            Access to Work is difficult to navigate. I have tried and failed to fill this in several times. The form is presented so that only a single page is shown at a time, and must be completed before clicking “next”.  However, I don’t know where to put information without knowing which questions will be asked, especially when I am not clear what information is needed. I also don’t know what to ask for. Advice from others includes to request an assessment, but also based on feedback from others I do not have confidence that asking for an assessment will be enough. Therefore, I need a good idea of what to ask for first. All combined, this will not be a quick form. So far, I have struggled to find time for this when I have other urgent work, home and health problems. There are many things I should personally do to make this easier. However, in general this could be made simpler by making all such forms make people go back and fill in missing stuff at the end, rather than at the beginning.

4.8           Summary of changes that would support people like me:

a)    Increase availability of pre-diagnosis support, for example with a toolkit of clearer examples of adjustments that can be made.

b)    Reduce waiting times for diagnosis.

c)     Reduce the burden of education on the individual by increasing understanding and awareness of autistic individuals at all levels of society.

d)    Destigmatise autism.

e)    All autistic individuals may benefit from support to implement effective adjustments (i.e. how to navigate institutional and legal structures). This could be improved by having someone to advocate for us, a work coach or neurodivergent mentors in a similar field who understand occupation-specific challenges.

f)      Normalise sensory environments as an accessibility issue. For example, many buildings have profiles on AccessAble[14] but few of these have sensory information.

g)    Make some simple sensory changes standard building practice.

h)    Make the Access to Work process more neurodivergent friendly, for example by being able to progress on the form and see all questions before filling them in.

5         Desperately needed healthcare is difficult to access, and awareness of autism-specific health outcomes is extremely limited.

This section corresponds to the strategy item Tackling health and care inequalities for autistic people and is based on personal experience and some selected research literature from reading I undertook in order to get healthcare.

5.1            Accessing any component of healthcare is hard for me. The physical environment is difficult (e.g. noisy and echoey rooms) whilst initiating any care usually involves phone calls, which are very difficult to receive or to make, because I so regularly misunderstand people over the phone. Previous healthcare encounters have discouraged me from engaging with healthcare practitioners; many of my health problems come from my experiences of being dismissed by healthcare practitioners for so long. There should be quiet waiting spaces, communication methods that are not phone calls (how do deaf people communicate?), and an understanding of prevalence of healthcare avoidance in the autistic community due to adverse healthcare experiences[15].

5.2            Communication to adapt any ongoing care is difficult due to social communication and to communication methods. Normal communication barriers are exacerbated by the need to fit into a doctor-patient narrative (Triple Empathy Problem[16]), while implicit instructions can be missed (such as that I should come back if tests etc are negative but I still have problems). Communication methods in the NHS is limiting, for example I am not able to email or message the NHS provider responsible for my autism diagnosis, but am supposed to call them. I don’t know how to use phone calls to fix the long wait (four years) and even an everyday phone call takes a minimum of half an hour recovery time from the stress of trying to hear and communicate, so I must write them letters, which they lose.

5.3            Pre-diagnosis support is absent or inappropriate. For the last four years, the NHS provider who is responsible for my diagnosis has said they will support me in the meantime. However, I apparently cannot go on the waiting list for an ADHD assessment while waiting for an autism assessment (despite the high comorbidity) and any specific therapy I request is denied because “without a diagnosis, it might be done wrong”. Instead, I am only offered CBT, which is generally less successful for autistic individuals and which I already know I must adapt to myself (but am not trusted to do for other therapy types). From previous experience I already know to be careful working through the recommended CBT books, as they can be harmful. For example, being told to try exposure therapy to treat misdiagnosed social anxiety and having my experiences dismissed (being disbelieved when I state that the anxiety comes from the sensory environment rather than the social situations). There needs to be pre-diagnosis support other than generic mental health support, diagnosis times must be improved and more research and awareness of therapy effectiveness for neurodivergent individuals.

5.4            I find that in healthcare settings generally I often educate about my condition. This is a recurring theme, not just mental health therapy as in the paragraph above. For example, teaching my physiotherapist about my body experiences, despite them being very common among neurodivergent individuals.

5.5            Even healthcare practitioners who are aware of autism are not aware of how this might affect healthcare. For example, medication side effects that are common in the autistic population, or awareness of conditions that typically co-occur with neurodivergence and often need to be treated together, such as EDS, MCAS, POTS, fatigue. Not treating these together typically improves one condition to the detriment of another in this constellation. The All Brains Belong initiative is a multidisciplinary US primary care practice whose “All The Things” project provides an introductory letter and clinicians guide that I take to all my appointments[17]. Alexithymia (poor emotional identification) and poor interoception (awareness of internal sensations) make it hard for me to understand what my body is experiencing and therefore what to ask for. For example, I have to ask my partner how tense I am. This is extremely common in autistic individuals and prevents accurate and timely diagnoses, for example not describing pain in the “expected” way resulted in diagnoses for IBS and vulvodynia both being delayed by many years. Research on health of autistic bodies and brains is shockingly behind, and essentially absent for intersectional groups such as women, the elderly or ethnic minority groups. Both general and specialist healthcare practitioners need not only increased awareness of autism but specific understanding of how autism affects their discipline. Alternatively, specialists could be trained on the presentation of conditions in autistic individuals. Finally, collaborative approaches where patient and practitioner work together should be encouraged.

5.6            I know enough to write this evidence but still find self-advocacy in healthcare difficult. Requesting a neurodivergent-aware GP and longer sessions (to reduce the impact and pressure of communication difficulties) has worked out very well for me, although it was never suggested as an option until I asked for it. However, I don’t know what to do about all the other areas of healthcare I need (multiple chronic undiagnosed illnesses, four-year wait for a diagnosis, occupational therapy, musculoskeletal problems etc.) I asked for help when I needed it most (four years ago) and feeling so disempowered does not motivate me to continue failing to navigate the NHS when even a typical, non-confrontational 20min phone call is the energy equivalent of several hours working through podcasts, workbooks, training manuals for occupational therapists etc. I only went back to my GP when I needed healthcare I could not get myself. I know that I need to find new methods to advocate for my healthcare, such as talking to different people, maybe formal complaints, but that will be a significant chunk of my limited energy and I have not yet worked out how much energy it will take and whether I can spend that. My upbringing told me to always trust the doctors and not to make a fuss. I need to unlearn this. Just as for all the sections above, I need help to be able to advocate for myself.

5.7           Summary of changes that would help people like me:

a)    There should be quiet waiting spaces and increased availability of alternative communication methods.

b)    There needs to be pre-diagnosis support other than generic mental health support and diagnosis times must be improved.

c)     Empower autistic patients to request GPs with specific neurodiversity training and longer appointment times, especially patients who are self-diagnosed or waiting for a diagnosis.

d)    Improve the education about autism in healthcare generally, including: the type of people who experience autism; how it affects communication; prevalence of healthcare avoidance in the autistic community due to previous adverse experiences.

e)    Healthcare practitioners also need specific understanding of how autism affects their area of medicine. Alternatively, specialists could be trained on the presentation of conditions in autistic individuals. Collaborative approaches where patient and practitioner work together should be encouraged.

f)      Support studies of healthcare for autistic bodies and brains, specifically including participants who are not all young white males. For example, including determining which “physical” conditions are comorbid with autism and the efficacy of psychoactive medication and talking therapies.

g)    Multidisciplinary centres focused on neurodivergent adults.

h)    More adult neurodivergent specific occupational therapists.

6         Additional Evidence

This section corresponds to areas covered in the questions that don’t easily fit into the current autism strategy and is based on personal experience.

6.1            The majority of autistic people I know are self-diagnosed. This is because of the difficulty accessing the diagnostic process and the lack of perceived benefits. This includes personal friends and colleagues in the academic community. For university students, about as many have disclosed a self-diagnosed as have an official support plan (which may be either a formal diagnosis, or a report by and educational psychologist).

6.2            From personal experience, there is an extremely large overlap between neurodivergent self-diagnoses and the queer community, who also have problems accessing resources and trusting institutions such as healthcare. Again solely from personal experience, I feel working-class people are more likely to be late diagnosed, and I know of very few people of colour who have considered this. Sadly, these observations would indeed correspond with disempowerment of marginalised groups. The overlap of neurodivergent and queer identities (both non-heterosexual and gender diverse identities) appears to be backed up by research[18] [19].

6.3            Autistic people are well placed to support autistic people with their needs. Many autistic individuals are experienced at coaching etc and there is a lot of expertise about sharing the autistic experience/ community support groups1. Resources to start up community support groups would empower those who took part – I have heard good things of such courses[20].

6.4            Feeling part of a community. Despite my many struggles, I do not feel I am allowed to join most autistic community groups without a formal diagnosis as I am not “disabled enough” or I am “too successful” by having a professional career. These groups are also often daytime only, or expect more attendance than I am able to commit to with my health. Unfortunately, neither am I confident of mainstream community inclusion. Instead, I develop new “niche” interests and join groups associated with those (or I did, when I had the health and energy). I am in the privileged position of having a job and being able to pay for group membership. Nevertheless, I would still benefit from a community specifically about autism and/or ADHD, and ways to participate in society more generally. Most places are physically too noisy, and I don’t understand the social structures well enough to navigate them comfortably.

6.5            I am concerned about the ability of autistic people to fully engage with decision making processes. Whenever I have tried to engage at any jobs I have worked at, I generally contact the wrong person in the wrong way, making the outcome I want to discuss significantly less likely. It’s not clear to me how to engage with politics at any level – this written evidence is the first that has been clear to me.

6.6            Being unsupported is very costly to me, with impacts on my productivity, ability to work and my health. Due to various difficulties which I associate with my autism, I was forced to temporarily drop down from full time to part time employment. I hoped that this would be temporary while I obtained the support I needed to work full-time again. However, I have not received this and have now been forced to permanently change to fewer employed hours. The hours I used to spend at work are spent trying to manage sensory needs and executive dysfunction, juggling difficult everyday tasks such as cleaning and teaching myself about autism through workbooks and podcasts, since I cannot access any help through the NHS. In addition to the pre-diagnosis support suggesting in other sections, more targeted material to work through and toolkits of adaptations to consider and reflect on would be helpful.

6.7            Sensory accessibility is a significant barrier to me. It prevents me using public transport, being confident of safe places to go to the toilet, or knowing that I can join in on social activities in advance because I don’t know if they are safe for me. Sometimes I am forced to spend several weeks at a time between work and home, because I don’t have the capacity to take the risk of a sensory meltdown in a place I can’t care for myself. Sensory support could be from a top-down approach (i.e. policy) or a bottom-up approach, where businesses encourage and highlight good practice. One simple example would be an allyship scheme where a quiet spot is available on request. This could increase trust and safety and enable individuals experiencing sensory overload to manage those overloads with dignity – rather than on the floor of the nearest disabled toilet. Sensory challenges feel more socially acceptable and therefore may be more achievable than other aims.

6.8            Changes that would help people like me:

a)    Access to a supportive, informed community group.

b)    Faster diagnosis.

c)     Better pre-diagnosis support for educating myself.

d)    Policy and/or community level schemes to improve sensory accessibility.

e)    Clearer examples of how to get involved in decision making, or support to do so.

7         Conclusion

7.1            Several suggestions arose in multiple areas. In all sections, I conclude that increasing autism awareness (to reduce the burden of education on the autistic individual) and enabling self-advocacy (for agreed but unimplemented adjustments) would be beneficial. In all sections, focusing on collaborative approaches with the autistic individual (i.e. myself or students) have led to significant positive changes. To enable collaborative approaches, autistic behaviours and discussions about autism need to be de-stigmatised. To empower autistic adults, an understanding of the internal experience and hidden challenges of autistic adults may help explain why accommodations are needed without relying on a narrative aligned with learning disabilities, which is inherently disempowering. However, I do not clearly understand why autism is so stigmatised and have come across little research in this area.

7.2            Healthcare access, healthcare inequalities, sensory difficulties and lack of a formal diagnosis are all major challenges for me. Hard to access and ineffective healthcare will sadly take longer to fix, especially those healthcare inequalities that will require years of research. However, other barriers could be improved with better pre-diagnosis support such as community groups, self-education material and example toolkits for reflecting on potential accommodations to ask for in all areas of life. These could all make wide-scale improvements for relatively little effort.

7.3            I would prefer that other late-diagnosis individuals experience a different path to my own, with easier access to the information they need to understand and advocate for themselves. I am grateful to all the many content creators and writers that have helped me over the last few years but look forward to a time when I can talk about autism freely, where doing so empowers me to discuss sensory, communication and executive functioning experiences, rather than reducing my perceived competence in due to disempowering stereotypes.

4th June 2025