Jane McNeice of Mind Matters tells us about how a late diagnosis of autism changed her life, about her new book, and how her late brother, Robert, continues to inspire her.
How do you identify as disabled, and what does it mean to you?
In 2021, I was diagnosed as autistic relatively late in life, at the age of 45. I had spent a lifetime searching for what I felt was ‘wrong’ with me, having felt different and ‘othered’ all my life.
My successful business is totally the product of Autistic obsession (aka special interest). I searched in the identities of the criminal fraternity and have a first-class honours degree to show for those years of endless searching. I then searched in mental health for 15 years, and my mental health training business is testimony to those years of searching: its success lies in the very fact that I am autistic. I wanted to reduce the kind of suffering I was experiencing daily, and which I still experience (the diagnosis does not change that).
I have a permanent level of anxiety which is linked to my autistic brain type, and high levels of social anxiety. I do my job despite this. Mental health trainer and business owner is perhaps the last job you’d expect a socially anxious autistic to be doing, but that goes to show what you can overcome if you are determined enough. My USP – in fact the USP of all autistics – is that we are off the charts on perseverance! Where others have thrown in the towel, we are still going.
Tell us a little about your business.
My business, Mind Matters, provides mental health training provision for workplaces and communities. I deliver mental health training weekly, and in total we deliver over 160 courses each year to hundreds of learners who go out and make a positive difference to their workplaces and communities. I am proud of this.
Mind Matters was founded in 2015, well before my Autism diagnosis. I was living with challenging anxiety and gastrointestinal problems at that time, which had disabled me for as long as I could remember. I had learned coping mechanisms for both, and made the deficits my strength for my business to succeed.
We offer mental health training in the form of courses such as Mental Health First Aid, and we also offer specific management training courses in mental health, for example the i-ACT (for positive mental health) training programme. We also offer resilience training and suicide intervention training.
I deliver 3-5 courses per week myself, and I have a team of excellent associate trainers who also support us to do what we do. Some of my trainers also have disabilities they are living and working with.
Mind Matters is currently branching out into training around neurodiversity and the different neurodivergent conditions. Mental illnesses overlap considerably with neurodivergence, so it is a natural progression to consider both together. Had the world have been doing this years earlier, I believe I would have been diagnosed much sooner. Instead, my own symptoms were mis-diagnosed as mental illness rather than the co-morbid symptoms of a neurodivergent brain. My diagnosis was life-changing in so many ways and I now offer ‘lived experience’ talks about my story.
Why did you start the business? Share your story so far.
I set up Mind Matters purely and simply to reduce suffering, particularly that arising from mental illness. I am a super-empath: “you cry, I taste your tears.” Given this, I often feel the pain of others as if it is my own, and when I do so I want to reduce it. Our training ‘capacity builds’ people to support others experiencing mental health distress, to intervene early, and to assist in recovery, as well as looking after their own self-care. At best we ‘save lives’ much like someone offering CPR to a person having a heart attack, but in all cases, we aim to reduce suffering through the training we deliver.
My late brother Robert had a learning disability and autism and, like me, experienced difficulties with his mental health. My brother is a big inspiration to the work of Mind Matters, as can be illustrated in this film we had produced a few years ago.
What do you see as the main challenges facing your business and its continued operation or growth?
Our challenges include meeting the ever-increasing demand for our services against how many trainers we have working with us. Our trainers need to be able to deliver to a high standard, be resourceful, efficient, and available when we need them. Sometimes we reach near full capacity.
I have taken the personal decision not to grow the business beyond what is realistically manageable given my specific autistic profile. As a late diagnosed autistic, one of the main challenges now is for me to try and be more authentically autistic – be myself and manage the autistic challenges therein. Autistics are more prone to burnout than neurotypical business owners, so this is a risk I must manage daily. It is thanks to the great small team that we have that we can manage the demands and deliver excellence efficiently. I would not want to compromise this and the values that underpin it.
What can we do to encourage more disabled entrepreneurs to start businesses – what is holding them back and what can we all do to help change that?
Speaking firstly for autism, the secret here is that they are already doing it, but many won’t know they are autistic. They will be living with the challenges, including co-morbid health issues, and the healthy and unhealthy coping mechanisms they use to survive. I’d have my focus on the very high achievers who simply move the goal posts higher on each achievement, but still lack confidence and self-esteem, who seek their identity through their career or business, and who eat live and sleep their business because, in reality, it is one of their autistic obsessions. Given there are statistically more undiagnosed than diagnosed in society, most autistics are hidden (until or if they are found). Most will also be suffering in some way, though it may not be obvious to outsiders. Usually, their lives will look pretty perfect to the outside world. Like me, many will be middle-aged high achieving women who were missed by health, social care, and education. To establish who these people are would help to promote what is achievable living with challenge.
Speaking firstly for autism, the secret here is that they are already doing it, but many won’t know they are autistic. They will be living with the challenges, including co-morbid health issues, and the healthy and unhealthy coping mechanisms they use to survive. I’d have my focus on the very high achievers who simply move the goal posts higher on each achievement, but still lack confidence and self-esteem, who seek their identity through their career or business, and who eat live and sleep their business because, in reality, it is one of their autistic obsessions. Given there are statistically more undiagnosed than diagnosed in society, most autistics are hidden (until or if they are found). Most will also be suffering in some way, though it may not be obvious to outsiders. Usually, their lives will look pretty perfect to the outside world. Like me, many will be middle-aged high achieving women who were missed by health, social care, and education. To establish who these people are would help to promote what is achievable living with challenge.
For people with other disabilities, again I think it is important to recognise how many of us are already working and do have our own businesses. For those seeking either, I’d say first and foremost: what do you enjoy? Are you good at it or could you train to be good at it? Would someone buy it? Once you can answer these in a favourable way, then the hard work of business start-up commences. You’ll never stop marketing, you’ll never stop trying to be better at it, and you’ll treat your clients or ‘buyers’ like royalty. Bring these ingredients together, and you have a recipe for success, regardless of any disability.
Set your own limits. Don’t ever let someone else define them for you. You are the expert in YOU, but you also must be self-aware, this is key. I did not know or recognise myself as a disabled person till my autism diagnosis, and yet it is not this diagnosis which disables me, it is the anxiety and gastrointestinal problems which I have managed for years and years.
Today I do identify as disabled. The risk is that now I could internalise someone else’s idea of my limits as an autistic person, when for years I had none. Why? Because I always compared myself to others who weren’t autistic, and I grew up with their ideals not my own, so that’s what I internalised. But because I never fitted in or felt good enough, I always had to go one step higher. What this proved in the end is that it was me who decided what I could do, not a label, but what I really did need more than anything was to know my identity and that I was autistic.
My diagnosis was life-changing – validating, a relief, an explanation, and so much more. Today it is me who is making allowances for my needs, but nevertheless, I am living proof that disabled people can and do succeed (in my case, where many neurotypicals might have failed).
What do you consider your greatest achievement or the proudest moment in your life so far?
The day I published my book, The Umbrella Picker, in August 2022 and finishing the London Marathon the same year, raising funds for the National Autistic Society. I also ran it virtually in 2021, but crossing the iconic finish line in 2022 was pretty good.
If there was one thing you could change about peoples’ perception of disability, what would it be and why?
I’d want people to question where their views came from and whether they are still relevant today. I would want them never to assume, but always to ask, and not to be afraid to ask or talk about disability, even if the response you get is negative. Why? Because by doing so you prove that you are a ‘Disability Talker’, someone who isn’t put off easily or afraid, and who is willing to talk about disability. This is the making of a great disability ally.
One of the biggest shamers of disability is that we hid it away and swept it under the carpet for a very long time. Mental illness was the elephant in the room, and suicide was (and sadly still is) the absolute last taboo, but we need to change all that. Notably, you cannot prevent suicide if you do not talk about it! We need to lift the carpets, bring the elephant to the table, and reach a stage where all disabled people feel safe to talk without shame or judgement.
I go against the norm in that I have always talked about my anxiety, and my recent autism diagnosis. If I am to show you and other disabled people it is safe to disclose, I need to lead by example, so I do. We are in many cases living longer, so if you are not disabled now, you may well be if you are lucky enough to become old, or you will have a loved one who is. It is everyone’s business.
Who or what inspires you?
My brother. This is his story.
Do you have a recommendation for a book or a podcast which has helped you along your journey?
Watch out for my new book hopefully coming out in the next year: Strength in Deficit: Business Success Because I am Autistic. I am dedicating my second book to my late brother Robert, who put the ability back in disability by proving the naysayers wrong!
