By Jackie Holmes
Star Wars toys including an impressive-sized AT-AT glinted next to a Labrador dog mannequin in the corner of the dimly-lit room and as I relaxed into the oversized sofa of Elaine Nicholson’s diagnostic room at Action for Aspergers and felt the weighted blanket blot out the sensory overload which had plagued me for 54 years, the tears began to leak and I began to feel for the first time ever – acceptance – that I was not broken, not defective, not a social leper, and might yet live to find purpose and put suicidal thoughts behind me forever.
The pain of The Loneliness of The Long-Distance (high-functioning autistic) Werewolf had become too much for me, at times, taking me close to the brink of the river of dreams.
Acceptance is what we neurodiverse crave most of all and often is the one thing we cannot have from the people around us – our families, our friends, our work colleagues, everyone we interact with who is not like us, pretty much.
It’s no wonder that so many burn out, give up, turn off and check out early after years of feeling like an unacceptable weirdo because you have a habit of blurting out inappropriate things (especially when others are eating), interrupting when over-excited and find it exhausting to navigate the neurotypical sea of vagueness and ambiguity, when we desperately need clarity wherever possible and suffer so horribly from sensory overload due to our hyper-senses.
Is it any wonder that years and years of being misunderstood at school (we perform remarkably well when left alone with a task), at home, at work, will wear a person down into a deep depression?
No, it’s no surprise at all, nor that there are legions of adults around the world who have never been diagnosed as being on the autistic spectrum because they performed adequately at school but have struggled through life often and have a harder time than the average Joe in weathering life’s ups and downs.
These people, the lonely werewolves like me (so many of us are affected by the lunar cycle, it can’t be a coincidence), usually end up seeking help, if they do at all, from their GP, who will usually prescribe antidepressants for the symptoms of insomnia, low mood, despair, not eating.
This is even though the NHS’s own guidelines prohibit the prescription of antidepressants to anybody on the spectrum – the effects are unknown on the differently wired autistic brain and not deeply researched but I can tell you, for me they were beyond horror.
Autistics, especially if high-functioning, are often mis-diagnosed as depressed or bipolar, or to have a personality disorder and can be prescribed a stack of medication, much of which is highly addictive and useless for us because we don’t have neurotypical brains.
My own despair at knowing something was different, that there were reasons I had unraveled to the point of complete non-function (what I now understand as shutdown and panic attacks), which all the doctors and shrinks to whom I’d been referred had failed to explain, became so acute that on several occasions an ambulance was needed.
Nobody was listening to me. Nobody took me seriously. For an autistic, there can seem only one logical way out, and some people take it.
However, we are also gifted with an incredible tenacity. We are all honey badgers, we don’t know when to give up the fight, we just keep on trying and we’ll find another way, a fresh way. That’s what kept me going.
It certainly helped that I’d been a journalist on newswires and Fleet Street for 30 years so reporting on my own predicament as a story, researching and digging into it, was something I knew I had brain muscle memory to do, if only I could find some energy and focus.
It had never occurred to me that I or anybody in my close family could be on the autistic spectrum, I just knew something was being overlooked and I had to find it, just like researching a complex story.
It was purely by chance in conversation I was describing my mother’s reaction to something as “almost autistic – but that doesn’t apply to women, or does it?”
I couldn’t help but notice (autistic ruthless self-examination) that what I’d noticed about my mother also applied to me, my daughter and two sons, also my father and brother. We are the Autistic Addams Family.
I dived into the subject, read all I could, and found the truth resonated so strongly, the relief of having an explanation which made sense cannot be described, it was so intense.
What was next? I was back at the point of trying to get medical professionals starting with my GP to listen to me, take me seriously and arrange a diagnosis.
I had decided at this point to start withdrawing from the addictive antidepressant SNSRI Mirtazipine but needed a doctor of some form to be involved to monitor and ensure a safe withdrawal from the drug,
Mirtazipine had caused me myriad physical problems and turned me into an insomniac zombie, full of terrors and determined on self-harm.
I was wary, however, of forcing a swift withdrawal because the statistics indicated this to be a dangerous path for somebody without any kind of clinical support or even counselling and I knew I’d have to do this one drop of liquid form drug less per week over a long period of time, with Valium to keep me calm and stable or at least a bit sedated.
I’d like to emphasize at this point that I should never have been prescribed Mirtazipine in the first place and it was a hell of a battle to withdraw unscathed, but I did manage to do so. It took over two years.
My GP shocked me by immediately accepting my self-diagnosis, the futility of continuing with addictive Mirtazipine and referring me to the local NHS autistic diagnostic centre with its endless waiting list.
But I couldn’t wait a year or more for an NHS diagnosis so contacted Elaine at Action for Aspergers, hoping that even a first-stage diagnosis would give me the boost in courage I needed to titrate off Mirtazipine.
I was terrified that an ambulance wouldn’t get to me in time, next time. I felt I was walking a tightrope on fire above a bottomless chasm, but I was ready to try. To save my life. For my kids’ sake, for my parents’ sake. For my dogs’ sake.
That was the frame of mind I was in when I drove to Corby in Northamptonshire to meet Elaine for the first-stage diagnosis.
I’d had to stay over in a Travelodge to make sure I was on time, allowed extra time to get lost, the usual, and I was filled with such a tumult of emotions, I’m still not sure what they were.
I was full of hope, I remember that. At the least, I hoped to be listened to, to be taken seriously and I had some optimism that I’d come away with some answers, some clarity.
I’d already spoken to Elaine on the phone so I knew her to be a warm, friendly and expert human being I could trust. It always helps me to meet a stranger if I’ve spoken to them first – another reason I loathe exclusively electronic communications, I can’t use my human polygraph skills to read people.
I expected to feel uncomfortable and somewhat interrogated during the diagnosis, to struggle to be understood and to feel, as usual, that I’m doing something wrong or off-putting (if only I knew what it was).
My expectations were completely reversed. Can you possibly understand how significant this was to me – to be finally listened to? Understood? Accepted? Perhaps it’s not me, it really is the others?
It’s given me the confidence to take the mask off, to be more unfiltered when I’m in comfortable company, to seek out more people like me, to avoid closed-minded neurotypicals who exhaust me, to make some huge and life-changing decisions about what to do and where I want to live.
It enabled me to claw my way out of the black pit of self-blame for not doing the impossible and “getting better,” after being prescribed drugs which would never have worked on me and don’t work on most people.
I’m not out of the woods just yet. The aftershocks of Mirtazipine withdrawal make themselves felt even now but I hang on tight to the knowledge that I am not defective, I am different, I am me and I am not apologizing for it any more.
I have found my tribe, they are the creative volcanoes, the neurodiverse, the warmest, funniest, most generous people you’ll ever meet and not appreciate.
My life may always be The Loneliness of The Long-Distance Werewolf but, having finally found acceptance – I choose life.
Do you hear me, Elaine? L’chaim!