Here members of the ND community share their experiences, journeys, and views, either through autobiographic blog posts or fictional short stories. Please get in touch if you would like to share your story!
Until her voice grows shrill by ADHDee IRL
My Story as a Late Diagnosed Autistic Woman by Vanessa Hughes
The Slipping Mask short story by Gregory Lawrence (Content Advisory: memories of abuse, horror/fear, stalking)
Until her voice grows shrill
by ADHDEE IRL (visit their blog here)
All changed, changed utterly:
A terrible beauty is born.
Easter, 1916 by W.B. Yeats
My life was changed utterly by a two hour Zoom call on 20th April, 2021. At 39
years of age, and after 20 years of misdiagnosis after misdiagnosis, I finally had
the answer for what was “wrong” with me. Why I don’t function like others around
me. Why I’ve had chronic insomnia since childhood. Why getting through the
routine of everyday life ends up way much more difficult than it should be. Why
I’m incredibly smart, yet lack common sense. Why I can’t just do the thing I so
badly want to do. Why I dropped out of university (repeatedly). Why I can’t find
my cup of tea/slippers/tea/whatever I was holding just a second ago, multiple times
a day. Why I exist in a perpetual whirlwind of lateness, chaos and anxiety. Why I
procrastinate, avoid and am distracted easily from every goal I’ve ever wanted to
achieve. So many “whys” were suddenly explained when my clinical psychologist
told me, “You are a textbook example of someone with ADHD Combined Type.”
I cried when I heard those words. The immense feeling of relief that washed
over me was like nothing I’d ever experienced before; the intensity of emotion
made every cliché I’d ever heard about a weight being lifted from my shoulders or
feeling ten tonnes lighter feel real. I was RIGHT. I KNEW there was something
different about me. I finally had my answer, could begin the correct treatment and
my brain would finally be my friend and not my enemy. Right?
I am starting this blog on 20th July, 2021, exactly 3 months out from my
diagnosis. I have discovered that the terrible beauty of receiving a diagnosis of
ADHD as an adult in Ireland is that while you might think you’ve finally won the
battle, you’re just beginning the war. Over the last 20 years I’ve been variously
diagnosed with insomnia, depression, generalised anxiety disorder, as well as
suffered from obsessive compulsive disorder and excoriation disorder (skin
picking). Once diagnosed, treatment and medication were easy to access. I’ve lost
count of the different types of antidepressants, anti-anxiety medication and
sedatives I’ve been prescribed and taken. I’ve been to sleep specialists, sleep
clinics, psychiatrists. I’ve tried hypnosis, neuro-linguistic programming, cognitive
behavioural therapy, yoga and reiki. I’ve done everything asked of me because I
was desperate to find out why I just didn’t seem to be like most people, and why
the medication I was prescribed just did not work. My mental health has been
destroyed in the process. My bank account drained. My sense of self-worth
eroded to almost nothing. How was it possible to fail at getting better?
After eschewing medication since before the birth of the first of my three
children, in 2020 I decided to try again. As I lay in bed sedated up to my eyeballs,
yet with a brain that still refused to let me sleep, I came to a realisation. The only
thing that made sense to me at that point was that all along I had been treated for
the symptoms of some condition, but not the cause. I began to read up about my
symptoms and found that they seemed to align with those of ADHD in women. I
self-referred to a clinical psychologist – not an easy choice or cheap option in
Ireland – and my suspicions were confirmed. Only now, in order to access
treatment for ADHD, I must be rediagnosed by one of two psychiatrists in the
country who will work with adults with ADHD and prescribe them the off-licence
medication needed to get their brain chemistry in better order. My appointment is
for some time in 2022. I will be 40 years old.
I feel angry that this is the situation I now find myself in. I feel bitter that I
wasn’t diagnosed sooner. I feel betrayed that after all the medication I’ve taken
over the years, I have to fight to get the one(s) I actually need. I feel let down by
the Irish medical system, which now seems to see me as a liability. But most
importantly of all, I feel a sense of peace. I can be kind to myself. There was
never anything “wrong” with me: ADHD is just a facet of who I am and now that I
know that, I can be kinder to myself for my perceived failures.
I am an Irish woman with ADHD. And I will shout about it until my voice
My Story as a Late Diagnosed Autistic Woman
by Vanessa Hughes (watch a video version recorded by Vanessa here)
Best day of my life!
In August 2016, at the grand old age of 46, I experienced the most profound,
and arguably, best day of my entire life. I learned that I am autistic.
I am now 50 something. A neurodivergent woman, proud mother to two
wonderful autistic/ADHD children and wife to an incredible autistic man. I’m
also Mum to eight (probably autistic) adorable but rather naughty cats and
friend or guardian to any animal that crosses my path. I am a British expat
living in Belgium and I identify as European. I am very internationally,
I remember every second of my final, face-to-face assessment – as though it
was yesterday. After a lifetime of feeling ‘wrong’, different, out of place and as
if I was always missing that ‘something’ that seemed so obvious to others, my
diagnosis finally made sense of everything up to that point. I felt like I had
just discovered the real me. I felt liberated. Full of joy with a new found
wonder at this me I had not previously been aware of.
My only regret was not knowing much sooner. Late diagnosis can mean that
much damage and trauma has occurred throughout life up to that point, due
to not knowing about our differences and not having them supported or
understood. At best this may cause misunderstandings and loss of friendships,
but the negative effects are often much worse than that. Abuse, trauma,
bullying, gaslighting, exclusion, rejection, missed education and injustice are
just some of the negative impacts that come from having neurodivergent
brains and living without the necessary understanding, support and acceptance
I have several co-morbidities and other health conditions, some of which were
directly or indirectly caused, or made worse by, not being diagnosed as autistic
when I was very young. Here are just a few conditions that I personally have
experience with: Ehlers-Danlos Syndrome, Post Viral Syndrome, Addison’s
Disease, ADHD, Auditory and Verbal Processing Disorders, depression and
anxiety and several auto-immune conditions. I am not only neurodivergent,
but diverse in many other ways and as a physically disabled woman, I am
passionate about acceptance of all difference in society.
Why I love my autistic self.
Autism has brought about many challenges for me but I would not be without
it. It is me. I wouldn’t let anyone take it away for a million pounds. An analogy
to separating the me from it would be like separating the demon from the child
in Philip Pullman’s, His Dark Materials trilogy. It makes me who I am.
And I am a good human. Autism has made me the sensitive, empathetic,
patient, hardworking, enquiring, philosophical, deep thinking, open minded,
creative, fun-loving, compassionate and determined woman that I have
My emotions are deep and intense and I am often too empathetic, which can
be painful for me. I have very strong morals and integrity. I love to please and
I hate lies. I like to follow rules (although admittedly, only when they make
sense to me). I am an independent thinker who often thinks outside the box. I
am a free spirit, who hates to be confined by societal constraints and pointless
norms. I’m extremely intuitive and very caring. I’m creative and I can
hyperfocus on things that interest me to the exclusion of all else. (Not always
Whatever I do, I attack it with 1000% and am somewhat a perfectionist. I
always do things to the very best of my ability. For me, there is no such thing
as a quick project or doing something by halves, even if I want to and I will
often deep dive into things. I am really proud of my achievements and
although they take a lot out of me, I know that it’s my autistic mind that
makes them possible.
I don’t think I can possibly live long enough to experience everything that I
would like to. I will also (try to) find ways to do things that I otherwise can’t or
shouldn’t be able to do. As my mum always said, “Where there’s a will, there’s
a way.” My autism, I believe, has been the reason I have been able to achieve
so many varied things. I’ve taught myself many skills, had uncountable intense
interests and hobbies, written and produced my own album, found art and
craft skills (that still astonish me), turned my hand to anything I’ve needed to
for my family and had too many different jobs to list here. One of my most
cherished moments was when I acted with the actress Nicole Kidman for a
few seconds in the film Grace of Monaco.
As a dancer, I grew up performing on the stage and this is where I always felt
most at ease. (It’s much easier to perform on a stage than talk to someone in
real life!) I adore colour and nature and seem to feel connections to these
things more strongly than others. I am a big kid at heart with a child-like sense
of humour and since my diagnosis this side of me has been able to come
through more and more. I get enormous pleasure from the simple things in
life such as a flower, a bee, a drop of rain, a Disney movie or a puppet show.
Read the rest of Vanessa’s journey here (continue on page 3):
The Slipping Mask
by Gregory Lawrence (Content Advisory: memories of abuse, horror/fear, stalking)
Melanie was settling in for bed, adjusting cushions and cat for the latest episode of “Ex
on the Beach” when an authoritative shriek pierced the night. Shock at the noisy intruder turned to consternation as she recognised the culprit. It was like an echo from days long past, still eliciting the same visceral response. What the hell, who even uses landline phones anymore these days, she thought. Melanie had only got one when she moved into this flat in a side street just off Leith Walk a few years back as it was included in the broadband deal at no additional cost. And, of course, because her parents insisted, in particular with her being all on her own for the first time ever, bar a short-lived fiasco in a flat-share in the city centre. ‘So how do you think we would get a hold of you if you got your mobile off for whatever stupid reason, and we need you, or vice-versa. The latter being more likely, of course, as you got a brain like a sieve, don’t we all know it, Mel’. She decided to let the phone ring out, distracting herself by lifting up Louie, her ginger tomcat, and sitting him on the pink cushion next to her.
Forcing herself not to count the rings was no use, the more she tried not to, the more her body kept score. Second ring. She pushed her face into the shiny fur. How could it be so soft and smell so fresh, when all he had to clean himself with was spit? Third ring. At least she was able to withstand the Pavlovian reflex of getting up and answering, a remnant of indoctrination from a different age. ‘Bloody answer the phone, will you, Mel, it’s only gonna be trouble from school anyway, or one of those bums you call your mates.’ Fourth ring. Back then, too, she had feared the horrible sound, making her skin crawl, almost as much as answering it. Even her friends, referred to as bums by her dad, often were just that, and she hadn’t really relished getting wasted with them all that much; but on the other hand, she also hadn’t wanted to waste away in her room, just wasting time, and need to get out of the house. Fifth ring. Nothing good could come from that shrill siren call. She felt an itch in her eyes, making her rub them furiously. On the telly, a commercial was singing the praises of panettone, whatever that was; now her eyes were tearing, and she could not see. Sixth ring. Melanie simply loathed speaking on the phone, now more than ever, perhaps ironically, given her profession, working in a large call centre at South Gyle. However, it was different then. Seventh ring. Once she passed the gates of the call centre, she slipped into noise-cancelling headset and the armour of professional politeness, armed with a script of infuriatingly inane questions and responses she had to follow no matter what. Eighth ring. The commercials were over, and Melanie was getting seriously annoyed now, drumming her fingers on her knee. Ninth ring. With a drawn-out meow, Louie jumped off his cushion and scratched at her bedroom door. The ringing had stopped.
She did not know whether Louie wanted to be let out, only to then beg to return a moment later, or whether he was hungry, again, but he would have to wait. Where was the remote? She found it on the stack of magazines next to the bed, just in time to turn the volume up a bit. The moment she had been waiting for, the test of faith for Danica and Charlie. For lack of Louie, she gripped the pink cushion tightly, hugged her blanket to herself. When she felt the noise, she first grabbed the remote, but realised that it wasn’t the TV being too loud. It was the bed vibrating, gently; it felt a bit like when she was stroking Louie, not altogether unpleasant. It was her mobile phone that was buzzing; this was, however, unpleasant. With a sigh, she found the phone under her blanket and took a look at the display. Private number. Might be important, but then they would certainly leave a message, wouldn’t they. Swiping down to reject the call, she heard Louie purring. He kept it up while sauntering back towards the bed. Playing cute, so it was likely food the old gourmand wanted. The purring grew louder and louder, more mechanical and rhythmic. The mobile, again, a text this time.
‘I know you’re here,’ it read.
Read the rest of the story here (continue on page 3):
Please get in touch if you would like to share your story!