Monday 11th September 2023: On Being a Neurodivergent Mentor Plus Book!

Hi everyone!

You’ve either been coming to this blog for a while now, in which case: welcome! I’m very happy to see you back. For the rest of you, you’ve probably found this blog via the QR-code on the side of my poster, at the Neurodiversity in Higher Education conference at the University of Bristol. Welcome! This poster is referring to my book, my first with Lived Places Publishing, based in Boston, Massachusetts, to be published sometime between late 2024 and 2025.

What?!?!? Another book?! You’ve just finished two, you idiot! Yes, this is book number 3, for those of you who’ve been following along. I know. It’s weird to be in my mid-thirties and be invited to do things by others, rather than having to beg and chase people for the privilege of not dying under capitalism. It won’t last forever, I know. But still, it’s good to get things out there. It’s exciting and a bit terrifying, frankly. But I’m on my way. The deadline for the book is the 31st of July 2024.

It’s got a big, long title, since the plan is for it to be used as a textbook at universities in the English-speaking world and a bulky title makes it easier to look up in university library systems. Yes I write textbooks now.

Why did Lived Places get in touch with me? I’m a UK-based DSA-funded mentor for autistic university students. As far as I’m aware, I’m the only actually autistic mentor working for the particular (though pretty monopolistic) company I work through. DSA, or Disability Student Allowance, is a pot of money accessible to all disabled students in England, with the intention of diminishing educational inequalities.

That funding is accessible through Student Finance England and is paid out directly to the companies providing students with accessibility technology, with physical health support such as specialised furniture, accessibility software, study skills support or mentoring. The company I work through pays me as a self-employed worker. Therefore, I only get paid when I work.

I have been a mentor for autistic students unofficially since early 2018, when a former student got in touch with me in order to discuss his university time. I had to stop when things got too busy for both of us, especially since he lives in a different time zone to me. I didn’t start properly until 2021, though. I had been teaching for years by that point.

After leaving my final teaching job in early December 2020, I instead used my experience as a personal tutor to start teaching special educational needs students via alternative provision. The students I was working best with were autistic – obviously, because so am I. They didn’t have to mask in front of me. If I wanted to be any good, I couldn’t either.

In early 2021, I began working with a student for A-level English, but as this student turned 19 shortly after we started together, it naturally evolved into more of a mentoring situation anyway. I knew I was going to move to Bath, so I decided to become a mentor to autistics. Why did I think I could do it?

What makes a mentor?

The most important thing a mentor can bring to their work is lived experience. I believe that every autistic person who graduates university should be able, with training, to become an autism mentor themselves. The benefits are obvious from the experiences I’ve had with students.

Autistic people, due to the way our brains work, struggle with executive functioning, self-webs of cognitively baffling intuition advocacy and self-management. We are expected to do all the work our neurotypical peers do, as well as manage our spiky profiles and sensory sensitivities, manage the socio-emotional awkwardness of just not fitting in, the manifold social rules and expectations we can only access cognitively but are intuitive for neurotypicals; and the kicker, make it look easy.

That.

It doesn’t always work. Personalities can clash and I’m a very difficult human being. But when it does work, it really does. In this book, I am interested just as much in my failures as a mentor as my successes, as well as the very real obstacles we face as autistic people trying to interact with institutions that seem to be made to exclude us.

Personal

Being a mentor is personal. It has to be. I cannot mask in front of my students. Mentors are the first line of defence the student has against the system of the neurotypical university, so humility and authenticity are vital. If I pretend to be anything I’m not, the student will want to tear off my mask. As much as autistics need to mask in front of neurotypicals, they also can’t stand inauthenticity from the people working with them.

Each mentee creates their own experience. I don’t have a set agenda, unlike other mentors, who may use the conversion therapy-inflected systems they’ve been taught in their previous education. I allow the student to set the agenda. That sometimes means missing out on a session when the student is busy and to reschedule when we’re both available.

Some mentees need me for admin purposes. Admin is hard. The fact we’re dealing with opaque, ableist and unjust university systems that seem geared up to eject us at the earliest opportunity is even harder. There is a reason for the high dropout rates, and it’s not us.

Regarding admin, autistic inertia is real. So are emails and the necessity of communicating with staff. I remember the difficulty I had as a young (and even older!) adult paying bills, making phone calls and getting basic life things sorted. It was frustrating for my mother, too, who would worry and worry – which only exacerbated the inertia. When it’s too painful, I’m not going to do it. Is that reasonable? No! Is that logical? No! But are brains? Despite the well-trodden prejudices about autistic people and our supposedly inherent limitations, no, neither are ours. To our ongoing frustration, I might add.

Despite these issues, whenever faced with a problem, I choose a radical path: the student is right. This is not always appreciated by university staff, but the ones who do, really do.

Emotional Wellbeing

Being a mentor is emotional. It has to be. Some of my mentees talk to me about their experiences socialising, even falling into therapeutic-adjacent conversations. I’m not a therapist and I don’t want to be, so I can’t actually tell people what to do. I will give advice, if asked, but more like an agony aunt than a therapist. More a Mariella Frostrup than a Jennifer Melfi, though with better politics than both.

At the same time, I am aware of reality. There is no meaningful safety net for autistic people. Despite repeated assertions of safety nets and the stated ambitions of making accessible mental health care all the way back around the 2009 Autism act, that has simply not come to pass. In most cases, autistic children who need mental health care are shown the door by CAMHS (Child and Adolescent Mental Health Services), because the expertise isn’t there. That is so, of course. It would be worse to claim that it was there when it isn’t. Still, for autistic children struggling to exist in a world that seems set on destroying them, that’s cold comfort. Instead, we need systems of mental health support that are created by and for autistics, delivered by us. Neurotypicals already have this system: the entire system has been created with them in mind, not us. That’s why we need to make another system. Neurotypicals can have this one for themselves. Take CBT with you on your way out.

The radical thing to do is, again, to believe the student at their word. If they are concerned about their mental health, it’s never just ‘fine’. They have spent their entire lives being told their feelings were wrong or did not matter, either explicitly by CBT-trained therapists or implicitly by the way society functions. That means that the student doesn’t just disclose a mental health concern for no reason. They only do so if they trust you. It’s dangerous to disclose a mental health concern if you’re autistic, so, if they do disclose, I as the mentor am the first line of defence, together with their personal tutor if they have a good relationship with them.

My own emotions and experience, far from being an obstacle, are what makes mentoring work. Of course I’m affected by the students and their lives. I care, sometimes to my detriment. I will go the extra mile, because when I was a student, I needed someone to do so for me. My heart is what guides me. My intuition and empathy are just as valid as the student’s. I’ve had a lot of experience in my 3.5 decades on the planet. I’ve got some stories. This sharing of experience is vital to autistic connection making. No, mentoring isn’t clean and absent of any and all emotional bias. It runs on it. And sometimes that means it doesn’t work.

Political

Being a mentor is political. It has to be. I can only work as a mentor if I’m cognisant of the real obstacles we face and how we intersect. I need to be curious and humble about the experiences I don’t share with my mentees. I’m not a woman, I’m not trans or gender non-conforming, I’m white in a white-majority society. I learn so much from the experiences my mentees share: they decentre me. This is vital. During the hour or so a week, I am their mentor. We may just be spending an hour making each other laugh, but still, it’s vital that we’re both here and that we’re having this conversation. For autistics who spend their entire day interacting with neurotypicals, they don’t really have the chance to de-stress and unmask a bit.

Despite the existence of Elon Musk, the autistic community doesn’t have money. We really don’t. Life is expensive, especially when employment is full of artificial barriers, and costs us so much energy. Since being autistic runs in families, it’s also possible that the student’s parent(s) might be autistic, which means they will have had issues accessing employment. In any case, there is never enough money, and financial anxiety can be stultifying for us. It’s important to be mindful that the idea of no longer being able to pay our way is disabling.

Most autistic people are LGBTQIA+. that means that any autistic mentor will likely also be queer. But that doesn’t mean they don’t work with cishet students, who are also owed generosity and kindness. It’s just that having lived experience of anti-queer resentment makes it a little bit easier for a student who feels like they’re alone with their worries.

Lived Experience

I would like to start off by stating that I don’t hate neurotypical support workers. I really don’t. I’m just mindful that, due to the double empathy problem, they struggle to emotionally intuit us. That’s okay, I don’t blame them in the slightest. But there are limits. I am concerned about the wellbeing of the student when the mentor is neurotypical, since they can easily miss serious problems, even leading students into states of overload, causing meltdowns, shutdowns and their internalisation. All this adapting is to the benefit of the neurotypical mentor who, usually, has no idea that the student is even doing this for their benefit.

There are real limitations for neurotypical mentors in trying to support neurodivergent students.

• First, they do not know what it’s like to be autistic. They haven’t walked the walk. They don’t know the way we present anxiety, depression, meltdown and shutdown. They don’t know how to survive university with all its expectations and stressors that, due to the double empathy problem, they are simply not equipped to empathise with.
  
• Second, the training they have received on autism, if they have received any at all, is usually false, malicious, eugenicist. Most training on autism still adheres to ABA/PBS/Conversion therapy principles. These see us as a disease which needs to be eradicated. As a consequence, neurotypical mentors’ views on what we can and can’t do are only through a limited, ableist framework.
  
• Thirdly, culturally, autism has been coded in a very specific way. Simon Baron Cohen famously conceived of us as people, but less. We miss something vital that makes you human: empathy. This is obvious nonsense for anyone autistic. For decades, we have been trying to argue the opposite. Has that mattered? Not at all.
  
• Fourth, the kind of person who works as an autism mentor is usually – but not exclusively – female, white, of a certain class background. The work is inconsistent and not very well-paid. As a consequence, they do this work in order to maintain their self-conception of being a ‘good person’. In my history as an advocate, challenging ableism from these people is very difficult to impossible. When challenged, reality doesn’t matter. What I’ve done is offended the way they think about themselves, since good people do good actions and bad people do bad actions. If they do a bad thing, they must be a bad person – but they cannot be a bad person, so they cannot do bad actions. Therefore, I need to be destroyed. I have many stories and never signed NDAs so there might be some juicy stuff in here.
  
• Fifth, because of all this, the power dynamic is necessarily skewed. That means there is greater probability for harm to be caused, intentionally and unintentionally. Due to the Double Empathy problem, there are endless possibilities for misunderstandings. Due to Neurochauvinism, we are less likely to be believed when we express concern or even disclose harmful behaviour done against us. Instead, we are told that our serious concerns upset people who have to hear them. As neurodivergent mentees with a neurotypical mentor, we are doubly disempowered in this relationship.
  
• Sixth, you have to be willing to kick up a fuss. My first and only responsibility is toward the student. They are right. When we take that view, there are inevitable confrontations up ahead. When you work in a system already set up to benefit you and those like you, you are not going to be as willing to rock the boat.
  
• Seventh, again, empathy. As autistics, we have a natural empathic relationship with others like us. This means we can pick up on issues that the student is still trying to verbalise. A neurotypical is more likely to miss all the signs, especially when the student is not ready to disclose a concern until it’s already too late.
  
• Eighth. As former autistic university students, we know how the system works against us. We’ve had a few years to consider the system and how it didn’t work. Somehow we made it through. Those are the most important lessons we can share. Neurotypical mentors do not have this depth of experience.

What makes me as an autistic person a better mentor for other autistics:

1. What makes me, as an autistic person, a better autism mentor than a neurotypical person:
   
2. Well, I’m autistic myself. I’ve been a student and somehow I managed to survive the complications of being autistic is university. I know the difficulties trying to make it through a system not set up for people like me. I have been on the wrong side of that system many a time.
   
3. My values. I’m aware of my position and power as a white cisgender man and know how much it matters to have people in your corner. I’ve been supported by a lot of people, too and I want to pay it forward.
   
4. I have a broad interest base and am excited by academic study of all subjects. I am utterly incapable of doing maths, for example, or architecture. But if someone loves doing it, I will get swept up in their enthusiasm.
   
5. I know I can write a good email. Contacting people is really hard (I used to dread my ‘unread’ pile). I can do it now. Plus it’s easier to stand up for someone else than it is for oneself. This is a thing with all autistics I know. We will go to war for anyone else when they are discriminated against; as for ourselves: ‘Ahhh… no… it’s fiiiinnnee!’
   
6. I’m able to advocate and challenge others with the student. Most autistics (including myself) are not great with conflict. I now know how important standing up against a system can be. I also know that single individuals are rarely responsible for a student’s bad experiences: that is systemic. Not personal, however much staff disagrees with that sometimes.
   
7. The most important one: I believe the student. Autistic people know their own mind. We are perfectly capable of understanding reality. We are deeply empathic with others and very sensitive to the world outside. When we are struggling, that is because the rest of the world is not making room for us. That is a choice, not made by us, but that we are blamed for.
   
8. If staff have any autism training at all, it is usually based in conversion therapy-mechanisms like ABA, PBS or even cognitive behavioural therapy. That’s what I seek to challenge. Autistic people are human beings, whatever Simon Baron Cohen says. Many times, I was completely on my own. That’s why I dropped out of uni the first time around. In my English degree, the staff knew me personally and looked out for my wellbeing. That mattered hugely. I was suicidal, then drugged-up for 3.5 years due to overmedication.

FURTHER QUESTIONS

1. I’m neurodivergent myself. What do I need to be able to do?
   We need to learn to self-advocate, be endlessly curious, be willing to be wrong, be willing to kick up a fuss and face the consequences, be flexible for the students but inflexible on their rights, be driven by revolutionary values on a macro-level and the welfare of the student on an individual one, be as independent as you can: don’t be an employee of the Uni if you can help it. If you are, have a plan B, C and D for other income if you face ableism within the system: and you will. Be a productive irritant. Follow your heart: it guides the way.
   
2. Ok then – what should change?
   See the university as a site of political movement, be vigilant against the status quo, be mindful that NT allyship is fleeting – the moment they’re challenged on their own practice, they will hit back. This is already happening in the LGBTQIA+ world. Help students build mutual aid systems. The autistic person’s empathy is priority one. Be mindful of intersectionality: trans issues, Queer identities, additional disabilities such as EDS and epilepsy, race and ethnicity, class and decolonisation. As I will be starting work as a Research Fellow in Disability Studies, I will be on the inside (kind of) as well. This change will be reflected in the book, too.
   
3. What about your boundaries?
   Why do you remain accessible to your students? Because having a safety net is preventative. No student has ever broken this bound of trust and taken advantage of my time.
   Why do you care so deeply? Because I can’t not, it’s why I’m good at what I do. It’s also a stressor for me. I have the capacity to drink in the negative emotions of those around me. It hurts, sometimes.
   Why do you go the extra mile? Because it’s what they would do for me in a heartbeat.
   Why do I also need to rest? Despite what you perhaps have been taught to believe, the student will care deeply about my wellbeing and they value mine more than I do. I still have a lot to learn. I’ve learned from working in healthcare and education that most conversations about boundaries are usually used to prevent change from happening or meaningful support to genuinely occur.
   I prefer to get things done early and initiate change so I won’t spend weeks putting out fires, organising interruptions to study or getting people out of hospital.
   Safeguarding – keeping oneself and one’s students safe. This means to make sure that there is someone working with you who you can confide in, they can give you advice. There very likely won’t be, that’s why this book is not just a call to action
   How do I know what my limits are? The role is one based in personal proximity. A kind of friendship will inevitably develop, because of the inherent intimacy of the role. Even for students I’m exceedingly proud of, I ask before I can give them a congratulatory hug, for instance, when they passed a difficult module.
   Autistic people are far more likely to be victims of sexual and relational abuse. I am currently working on a project, which I will share more about soon. No mentor should be allowed to engage in personal/romantic relationships with their mentees, because the student is in a position of vulnerability and the mentor in one of power, even if they are also autistic. This boundary is fundamental.
   My limitations: I also have my own access needs, such as the fact I swear compulsively, I get things wrong, I have severe rejection-sensitive dysphoria, I’m prone to misunderstandings and anxiety, I also have CPTSD and I can get triggered. As the mentor, I’m less likely to be forgiven when I mess up, and I will mess up.
   
4. What do your students think?
   I will interview each of my mentees on what they believe an autistic mentor should and shouldn’t do, how I can improve, and how they would do the job differently. I believe each autistic mentee should be able to do this job after they leave uni. This is where they come in, though their identities will be hidden.
   
   
5. How do I stop myself from burning out?
   On my techniques for dealing with burnout: activism without hope, based on values.
   
   
6. How do I make communities with other mentors?
   Tips on how to create, structure, then maintain communities of autistic mentors from the ground up.
   
   
7. I’m neurotypical. How can I help?
   This part will talk about stepping aside, work to change, seat at the table-politics + real change in the face of institutional resistance.
   
   
8. Where do you see this field in ten years?
   I will challenge the idea we can ‘solve’ or ‘fix’ autistic people’s lack of access. But we can certainly try. It’s a historical battle. We’re in it for the long haul.
   
   
9. Ok, could you, like, systematise this?
   Sure! Lay-out for a course I could teach Autistic DSA mentors based on this, paid for by universities (NOT the mentors themselves), to stand as equivalent/superior to training given to NT professionals + Lay-out for informed productive uses of this book in college/university courses. Ways I could involve this book into my own work.
   
10. How can we find you?
    My contact details.

These are the building blocks of my book. Please come and find me or contact me if you are interested. If you like, please send me an email and I’ll add you to my blog subscriber list.

Lots of love,

Jorik