Alcohol Free Me – Why drinking didn’t solve my social communication challenges (and other embarrassing stories)

When you grow up feeling like an alien, like an outsider looking in, when you desperately want to belong, to be included…but no amount of masking can equip you to pass as a ‘normal’ human being – that’s where alcohol comes in.

I didn’t discover I was Autistic until I was 42. Had I known earlier, maybe I would have accepted myself more, have understood myself better and embraced my neurological differences. As it was, I grew up thinking I was mad, broken, bad and wrong. I longed to be cool and popular; my school friends seemed so much more real than me, more alive, more present. Then I discovered alcohol shortly after getting my first part time job at 17 and I thought I’d found my answer.

You’d think I would have steered clear of alcohol giving my upbringing. My dad was an alcoholic. He worked hard 6 days a week and drank hard to make up for it. Growing up I both feared and loathed him, but hated myself more for not loving him like I knew I was meant to. I didn’t understand him anymore than I understood myself. I used to think his aggression made him a bad man, but I don’t think that anymore. Alcohol was his coping mechanism, but alcohol brought out the worst in him. In that way I guess I am more like him than I realized.

Fast forward. I’m 17, working in a DIY store with a load of other students, male and female. Some had their own cars, their own money, they certainly had more freedom than I.

The first time they invited me along to the pub I was almost giddy with excitement. Someone ordered me a Martini Rosso (since I couldn’t tell them what I drank…I’d never tasted alcohol and only knew of beer and wine). There were more Martinis and I think some Bacardi. I didn’t have to pay for a single drink. I felt warm and fuzzy. Relaxed. Silly. Pretty. I talked non stop and people laughed at me. But in a good way. They thought I was funny! It was a revelation. I was bowled over by my own confidence and shocked to realize that boys found me attractive. The fact that I vomited several times when I got home, that my head felt like it was going to split open the next morning; that all seemed a fair price to pay for the new version of me that came out to play when I drank.

So drinking became part of my weekend routine. Go to work, go to the pub, get smashed, be sick, do it all again next week. I had a succession of short relationships with male co-workers which were largely innocent as I was ridiculously naive on the sex front and had no intention of giving myself away. Yet to an outsider looking in I guess it wasn’t pretty and my poor mum was tearing her hair out. I’d always been her good as gold little girl, wouldn’t say boo to a goose, a model student. I’d spend most of my free time in my bedroom reading or caring for my menagerie of pets. I listened to Billy Joel and wrote stories. I wasn’t like other teens. Until I was (in her eyes anyway).

The more Mum tried to control me the more I rebelled with my trusty friend alcohol steadfast in my corner. She didn’t want me to ruin my life and I just wanted to have fun. And I did have fun. Throughout my teens and twenties. I laughed and danced. I kissed boys. I went to gigs. I shared secrets with my girlfriends. I was sick a LOT, sometimes over other people. I once woke up with nettle rash all over my backside having passed out whilst having a wee in the pitch black woods. I once let my best friend pierce my ear with nothing more than a needle, cork and frozen brussel sprout! I recall very clearly laying on the floor at a party in London with the whole room spinning and thinking, it’s ok, my boyfriend will come and get me soon. Then I spied him across the room, laying on the floor, in his own spinning world, waving at me. Oh the panic I felt then!

As brutal as the hangovers were and as much as I loathed being sick, what was worse was how difficult my sober Monday to Friday became. Because without alcohol, my social anxiety, my sense of isolation, that nagging sense of not being connected to anything, it was all a thousand times worse. Still, I held down really good jobs, I was recognized and rewarded, I grew my career and I got married. We bought a house. All the things you’re ‘meant’ to do when you’re a normal human being (which of course I was pretending to be). But behind the scenes my mental health was in tatters. I lived in a constant state of high stress (which I now know is very common for Autistic people). My emotions were all over the place. I struggled with uncontrollable rages, deep depression and acute fear of being judged and rejected. I had friends and family who loved me but they didn’t know me. I didn’t know me. I felt utterly alone.

Of course I can’t blame alcohol for all that. I was Autistic and rapidly spiraling into the land of bipolar which is a one way ticket. Had I known about my neurodiversity and mental health then, I hope I’d have cared for myself more and made better choices. What alcohol did though was temporarily make the bad thoughts and feelings go away. It gave me confidence to socialise, to be a louder, more colourful, entertaining version of myself. Then of course it just exacerbated my depression and made me feel hopeless. That’s not a good place to be.

My first marriage ended because I had a breakdown and I did what I always do when I’m broken. I retreat, I push people away, I reject them before they can hurt me. He was one of life’s good guys and and I’m eternally grateful for our time together. But I’m sure on reflection he thinks he had a lucky escape from me!

In my late twenties I met my second (hopefully forever) husband. N was younger than me but he seemed more grown up. He had a strong work ethic. He adored his family. He also loved to party. We had a fabulous first 5 years of working hard in our respective careers and partying hard all weekend. During that time we travelled the world together then came back and bought our first flat. Did it cause arguments that I would get paralytically drunk on a regular basis? Yes! Was my erratic behavior affecting my husband’s own mental well-being? Undoubtedly. Fortunately for me, his enduring love and the fun part of the fun times kept us together. When I think of us sharing Thai whisky buckets under the stars on Koh Phi Phi I smile; when I remember laying on the jetty the next day unable to get on the boat we had tickets for, I feel a bit stupid. When I remember us drinking cocktails with some rather gangster like Russians in Goa I remember the beauty of Ashwem beach and then the worry of how we would make our escape from them.

In 2010 we decided to start a family. Within 2 weeks I was pregnant with our sweet Angel Pablo. By that point I’d be drinking regularly and often heavily for well over 15 years. But the second I found out I was pregnant at 2 weeks, I stopped drinking. Completely. I also cut our caffeine. And it was easy! It was easy because my baby needed me, I had a role to fulfill, to grow our child and I guess it became my special interest. It was all I could focus on. If you’ve read my earlier blogs you’ll know that we lost Pablo during pregnancy to a rare lethal chromosome disorder. I’m yet to find the words to tell his story but suffice to say for now, that when he died a part of me died and I was utterly bereft. The hospital allocated me a bereavement counselor. Whilst kind, she only confused me. Her sessions were very abstract (arranging toys in a sand tray or selecting postcards from a pile that resonated with me). Autistic people tend to like facts and truths. We are very literal. Ambiguity confuses us. So when the counseling didn’t help I turned back to my old friend alcohol of course.

Vodka was my drink of choice back then and I had a remarkably high tolerance to it so I would free pour with whatever available mixer. Sometimes Diet Coke or soda and lime, but I’ve also been known to use orange squash or even powdered diet iced tea that my sister in law brought over from America! Fortunately I fell pregnant again with our beautiful rainbow L just a few months later. Again, I cut out alcohol and caffeine completely and it was an easy choice to make.

8 months pregnant with L

I maintained sobriety throughout my pregnancy and for 1 year and 13 days after his birth which is the length of time I was breast feeding him. In truth I did enjoy a few rare nights out with N that first year such as going to his work Christmas meal. But I stuck to two drinks and I maniacally pumped and dumped my milk when I got home as I didn’t want his precious body contaminated with alcohol.

When my breastfeeding ended (L got chickenpox and couldn’t nurse) I was delighted to welcome alcohol back in my life but my drinking pattern had to change. The clean, work hard weeks followed by the heavy duty partying weekends was not conducive to family life so we started drinking little and often. Just one or two vodkas once L was in bed but for five, sometimes six nights a week. It was a strange transition. Because I was never drunk, yet I’d never felt so dependent on alcohol. Now it wasn’t about making me more confident and sociable, it was about helping me relax and unwind from the intense stress of looking after a very demanding and unsettled baby (who would not be diagnosed Autistic until he was almost 6) and working part time as a Manager in a large international financial services firm where I felt constant pressure to prove I could still deliver and be committed to my career, despite now being a mum.

Occasionally one of the grandmas would look after L and we’d throw a house party. I’ve always preferred house parties to going out. I feel much more relaxed and safe in my own space with a handful of trusted friends than in a nightclub or pub full of strangers. Of course house parties brought their own anxiety because I have terrible OCD (for which I’m now medicated) so the mess and disruption caused by welcoming people into our home was a massive source of stress for me).

In 2014 I fell pregnant with our darling H. Our joy was short lived because 2 weeks later I was diagnosed with breast cancer. If you missed that story please read ‘The Baby Bump and the Bad Lump’ one of my earliest blogs. Anyway, long story short I was determined to protect H and deliver him safely whilst having treatment to kick cancer’s butt. Once again I kissed goodbye to alcohol and caffeine as well as (for a few months) sugar because I read it feeds cancer. It was such a surreal and terrifying time and arguably one where I could really have done with a stiff drink. But I was on a mission for my body to be the perfect safe haven to grow H whilst simultaneously fighting off cancer.

Me after my first chemo. 16 weeks pregnant.

So I smashed through a mastectomy, chemo and (post birth) radiotherapy all alcohol free. I remember for my 40th birthday we rented a gorgeous house in Deal and all our closest family came to be with us. It was 3 days after my final chemo and 4 weeks before H would be delivered. I sat in the village pub on a long table, having a celebration meal the night before. Everyone else was drinking. I felt dog tired and so wrung out from chemo I just wanted to sleep. The drunken behavior of my brothers was irritating me, the loud voices of everyone, the conflicting smells of people’s meals. I made my excuses and escaped to bed. When I woke up on my 40th birthday, most of my eyebrows and eyelashes had fallen out! Just like that!! I was horrified. Throughout chemo I’d been plastering them with a protective gel and was grateful to have held onto them. So waking up fat, bare faced and post-chemo grey on my special day was a bit of a kick in the balls. If I had balls that is. I think I ate a whole 2 tier box of Milk Tray chocolates that morning by way of coping.

I breastfed H from my one breast for 3 months before I was forced to start Tamoxifen and Zoladex injections (my post cancer medication regime). I was desperately sad about this and felt like my heart was breaking. So of course I turned to my old friend vodka. Again our drinking pattern was little and often (too often), it was part of our evening routine and I felt cheated if I didn’t have a drink. I noticed that N was always more sensible than me, he’d stick to one or none if he had an early start. I’m not going to lie, this irritated me. Because I felt like the bad guy for wanting more. Drinking relaxed me, it smoothed away the stress of the day, made me more chatty, hell – it helped with my libido if I’m honest because it’s hard to feel sexy when your body is a map of scars, your reconstructed breast is monstrous and you feel aged 10 years by cancer treatment.

And so it continued. By and large life was good. I was physically healthy (if not mentally), our boys were thriving and N’s career was going strength to strength. My Autism diagnosis which came 6 months after L’s brought overwhelming relief and answers to so many questions about my past and my present. I finally knew who I was, I started to meet others from my tribe and I even got a job working as an Autism trainer using my past experience in learning and development. The trouble was, my mental health continued to be a massive problem. I cycled rapidly in and out of deep depression and had dark periods of hopelessness and paranoia. Drinking absolutely made these feelings worse but it was also my go to response when I felt stressed.

My second significant diagnosis (Bipolar 2) set me on the path to better mental health management. I began taking lithium which did a great job of balancing my erratic moods and I started to feel in control of my life. However I discovered on a family holiday to Spain that lithium and alcohol don’t mix. A few cocktails whilst listening to music with the children and their cousins ended in me barely able to walk and being carried home by my sister in law and 12 year old niece! Waking up after that night, feeling absolutely awful but also deeply fearful because there were huge gaps in my memory of what happened…that was a wake up call. ‘You can’t allow yourself to get like that ever again’ I told myself and I had all the best intentions. But it was well over a year later at my brother in laws 40th that I finally found it in me to just STOP. Unfortunately the stop button didn’t kick in until I’d drunk three quarters of a liter of vodka, insulted several strangers, kicked N’s Uncle in the crotch (I have no idea why) and passed out on their couch by 7.30pm! 14th September 2019 will forever more be known as the day I went out with a bang.

In 5 days time on 14th November I will have been alcohol free for 2 months. This is the longest I’ve been AF in my life other than of course during my pregnancies. There have been fleeting moments when I’ve felt tempted like when the boys were fighting in the supermarket in front of a huge stack of pink G&T cans. But I know in my heart that I cannot drink alcohol anymore. That’s just me. People say ‘everything in moderation’. But I don’t do moderation. I am intense and full on. I don’t know when to stop. It’s why I’m so overweight right now because my binge eating is so difficult to repress. But I’ll crack it. Just like I’ve cracked this. Right now I’m just proud to be alcohol free. My lovely husband N is on the same bandwagon. Annoyingly he is super fit and has the body of a Greek God but hey ho. The boys have commented that it’s good I don’t drink alcohol anymore. From a ‘post cancer’ perspective, it is definitely wise for me to abstain. But most of all I just want to be me. The real authentic me without alcohol jazzing up my personality or numbing my fears and worries. Alcohol can’t solve my social communication challenges and anyway, who says they need solving. I’m authentic, Autistic, mental me and for all the dark times when I haven’t wanted to live I can honestly now say I’m glad to be alive.

My family

Back from the Brink

Hello again 🙂

So I think I’m finally getting my mojo back 💖 After many weeks wrestling with my bipolar, lost in clouds of black and unable to get any pleasure out of photography or writing, I can finally feel my passion and confidence creeping back. This week I took my sons to Petworth Park in Sussex. We spent a few happy hours tracking the wild deer, getting muddy, imagining fairy folk living under the colourful toadstools and delivering Halloween party invitations on behalf of Fangus the Bat as part of a Halloween trail.
I should have known that nature and our great outdoors would lead me back to sanity but when you’re in the grip of manic depression all you want to do is hide from the World.

Goodbye to Vodka

Usually when I’m struggling with my mental health I prop myself up with a bottle of vodka, literally. Vodka and I go way back. Vodka has seen me through a succession of traumas and has been a loyal companion at parties which (being Autistic) I tend to hate unless I’m wearing my trusty vodka jacket. But during my most recent bout of depression I attended my brother in laws 40th (under duress) and was passed out on the coach by 7.30pm having offended a great many people and kneed my husband’s very lovely uncle in his nether regions (I do not remember this and I’m still cringing about it even as I write). So after a night sleeping in the bathtub while my husband looked after the boys I realized Vodka had to go. For good. In part because of the humiliation I felt after the party but mostly because I had a realization that I have to start respecting my body more, especially as my body has fought cancer and should be nurtured not pickled if I want to stop it coming back.

Fresh start

So here I am almost 7 weeks stone cold sober. That’s the longest I’ve been sober since I was pregnant with H. I’d be lying if I said I didn’t miss it. I wish I could say I felt healthier for it…I’m sure that bit is still to come. The truth is I’m spotty, in constant pain with my dodgy knees and overweight from comfort eating. But I feel really proud of myself for breaking the reliance on alcohol, which started when I was 17 and began drinking to cope with social situations.
I can’t emphasize enough how healing it can be to connect with nature and I’ve definitely felt my ‘selfness’ coming back during a few sunset visits to the beach and my recent expedition to Petworth. I’ve also got a new psychiatrist and some increased medication to thank for getting me back on the straight and narrow. But most of all, I want to thank my lovely husband for his love and support and for bringing me back from bipolar land. N, these photos are for you. xxxxxxx

Nine Years an Angel – A poem for Pablo

A Gift

From the moment we had the idea of you, we wanted you.

You came to us in India, our happy place, on our first wedding anniversary.

Finding out you were growing inside of me was one of the best days of my life.

Finding out you wouldn’t survive, was the worst.

Just because no one met you doesn’t mean you didn’t matter; you did & you do.

You were our first son, a first grandson, a nephew, a cousin.

In those weeks I carried you we loved you enough for a lifetime.

We dreamed so many dreams of you and planned a future filled with you.

We called you Pablo, ‘little one’ believing we had precious months to choose your name.


We saw you kicking in my belly,

We heard your heartbeat strong and true…

But it wasn’t meant to be sweet boy, so God took us away from you.

They told us you were broken, that you never could survive.

They told us ‘try again’ while my heart shattered inside.

Then we held your tiny body as you embraced forever sleep,

A coffin rather than a crib, whilst all I did was weep.

Saying goodbye was the hardest thing I’ve ever had to do.

Father George said we gave you wings, I pray that is true.

Many (most) don’t understand the magnitude of our loss,

Think that pregnancy can be replaced with no emotional cost, Some told us we were lucky to find out early on,

That you were made for Heaven & not Earth, our little one.

Why must I apologize for feeling so much pain?

Why should I hide my grief and pretend I’m whole again?

A Garden:

Is it strange that your garden is a happy place for me?

A place where I can care for you and show you Mummy loves you.

Not with cuddles and stories, but flowers and trinkets, pruning and weeding, creating a safe space as beautiful as you.

I have breast fed your brothers and changed their nappies beside your garden,

They have taken their first wobbly steps in front of your resting place.

So many picnics eaten next to you over the years,

Each Easter, birthday, Christmas celebrated with new decorations for you.


Today I will make extra room for remembering & look at your photos & remember your tiny face, your hands, your feet.

My mind races with questions; are you still a baby in Heaven even though you are 9 years an Angel today? Or are you growing up like your brothers under the watchful eye of the other Angels?

My tears sting but I am glad and I am grateful Pablo,

Losing you meant that I did not doubt for one second that I should fight to continue my pregnancy with Henry, despite my cancer diagnosis. Would I have been as brave if I had not experienced losing you? I don’t think so.

I thank you from the bottom of my heart for sending us your brothers Leo & Henry, for making us whole again, for shining your light on us, our Guardian Angel.

God bless you baby boy, our Pablo, our first born.

Until we see you again

25 June 2010 – Forever carried in our hearts


Autism and Angel’s

Today I attended a conference at a local University to participate in a panel discussion and deliver a workshop on ‘Autism & Neurodiversity’ with my colleague Alex. The theme of the conference was mental health and well-being, a subject close to my heart. So despite my irrational fear and suspicion of academic types and a bad case of nerves, I was looking forward to the event.

As it turned out, it was a real treat to hear the other speakers and meet so many interesting people keen to learn more about life on the Autistic Spectrum. We had some lively discussion on the 5 D’s (difference, diagnosis, disorder, disease, disability) and how the Autistic community is divided in it’s definition of Autism. We also talked about the importance of changing the environment to fit your child rather than changing your child to fit the environment.

I am a strong advocate for the Neurodiversity movement and the social model of disability. I believe I am different, not less. I’m not broken, I don’t need fixing. My genetic make up is as natural and important to human evolution as the next persons. Yet I am still Autistic. My brain in wired in such a way that I struggle in social situations. I find the dialogue exhausting, new environments and new people overwhelm me. Today, my adrenaline was through the roof, I’d frankly sweated buckets, my eyes felt hot and fuzzy from the bright lights, my face hurt from smiling. All I wanted to do was get home, have a cuddle with my boys and be silent for several hours.

However, me being me I got hopelessly lost driving in the wrong direction (thanks for that google maps) before realizing I was close to the cemetery where our first son Pablo is buried. Since we moved away from Brighton I only visit his grave a few times a year on birthdays and Christmas; this weighs heavy on my heart. The first year after he died I visited him every day without fail, even when I was heavily pregnant. When L was born exactly 1 year and 4 days after Pablo grew his wings, our visits took place on weekends when my husband was around too so we could juggle tending Pablo’s garden with L’s nappy changes and feeds. Eventually just before H was born we moved further along the coast to afford a family home with a garden. Only 15 miles but it sometimes felt like 150 because at the time I didn’t drive.

So back to today and there I was stuck on a roundabout trying to work out which way to go when I realised I had a sudden and rare opportunity to visit our Angel at the cemetery. And there I spent a happy hour getting muddy and wet in the rain, talking to our first boy and pulling up handfuls of weeds with my bare hands to restore his overgrown garden. It was wonderful.

Right now? I’m cross legged on the armchair, comfortably full from dinner, the house is blissfully quiet as the boys are asleep and I don’t feel stressed! I’m not craving vodka. Or chocolate (well maybe just a tiny bit of a craving). But usually after a large and demanding event like today I’m a bit of a wreck. Usually I’m tired but I’m also irritable, unsettled, weighed down by the replay of conversations and whether I said anything stupid or embarrassing (over sharing is my speciality much to my husband’s horror).

But my visit to Pablo and a bit of rainy, muddy manual work has done me the world of good. It’s cleared my head, reminded me what’s important. Because as much as I want to change the world, and help others appreciate and accept Autism and mental health, nothing is more important than what I’m doing right here with my lovely, loyal and patient hubby. Raising our precious sons. Because if anyone is going to change the world they will…..and if you think I’m blunt, gobby and overshare wait until you meet them!

Brothers 💖

We’re All Mad Here!

Have you noticed the universal joy that comes from playing with bubbles, balloons or fancy dress? This is L, my fellow Aspie and ‘first son who lived’ (his words not mine). L is deliciously complicated, super clever, highly emotional (like his Mumma) and he is joyful. So joyful. I have thousands of photos I’ve taken like this. Of him popping bubbles, bouncing balloons, scooting, skating, speeding on his bike, wild swimming, tree climbing and of course parading around in different fancy dress outfits because who doesn’t like dressing up?

L is 8 at the end of this month and while I was flicking through old photos today trying to pick out some favorites for his birthday collage (a tradition of mine) I was struck how much happiness radiates from him when he’s doing these things. It’s like he’s giving off his own magical energy and if you could bottle it, we could save the planet.

Guilty pleasures

Now I don’t know about you, but when I’m stressed I reach for a big bar of chocolate. Or a box of cakes. Or maybe both. And vodka. I just love to self soothe with vodka! Hubby and I have been trying to avoid buying spirits in an effort to be more healthy. But you just can’t beat an ice cold vodka can you? Or can you?…. Because now I’m looking at these photos and I’m thinking. I’m thinking ‘Wow! What would happen if instead of stuffing my face with comfort food and poisoning my liver with vodka, what would happen if I went outside and blew some bubbles? Or had a bounce on the trampoline?

Healthy healing

One of my favorite past times is rockpooling on the beach.I can do it for hours and never get bored. Or wading through streams and rivers with a fishing net catching tiddlers. These things heal me, just like writing heals me or taking photographs heals me.

It’s so easy in a stressful moment to want instant gratification, a deliciously chocolatey snog with a bar of galaxy or a soothing alcoholic cuddle with your favorite beverage. But the benefit is so fleeting and you’re left wanting more which is bad for your waistline and your wallet. Even worse, when I’ve resorted to binging, boozing, or both, I feel rotten afterwards. I don’t mean hangover rotten. I mean depressed, unattractive, guilty, greedy. Because I know it’s bad for me.

Embrace your inner Buzz

Let me be clear I’m not trying to guilt trip you into clearing up your act. This is all about me. Manic depressives and cancer survivors should most definitely limit their alcohol intake and eat healthily. This is a fact.

So if you should venture down to the park or the beach this weekend and see a rotund yet energetic blonde woman dressed as Buzz Lightyear, blowing bubbles and brandishing a fishing net, with a camera swinging round her neck, don’t be afraid. It’ll just be me living my best life. Do come and say hi. I’m not dangerous, just bonkers in the very best way. But as the Cheshire Cat says ‘We’re All Mad Here’!

Send Help! When your Executive Function is dysfunctional

Autism comes with a lot of gifts. It also comes with some significant challenges. One thing I really struggle with, is Executive Function. The diagram attached (credit: http/ – Dr Brown) provides a good summary of the skills that make up our Executive Function such as organization and planning, emotional regulation and working memory.

Introducing OM

How I describe it to people when I’m training them is that it’s like having a dedicated Office Manager in your head. Someone who organizes your thoughts and responsibilities, reminds you what needs to be done, helps you switch focus between priorities, they even make you a metaphorical coffee when you’re stressed and help you practice mindfulness to manage your frustrations. Your Office Manager (lets call them OM from now on) is invaluable.

Except in someone with Autism, your OM is on strike. They’ve downed tools. Left the building. No handover. No temporary replacement. Certainly no coffee.

For me personally, this makes my life rather difficult. It makes it chaotic at best and a shambles at worst. It’s why I’m late for everything no matter how early I get up or how much I prepare before hand. It’s why my short term memory has more holes than a ring donut factory. It’s why I can hyper focus on one topic quite beautifully but if required to switch tasks at short notice I freak. It’s why I’m hot headed, prone to tears, my passion can inspire but it also intimidates. My forgetfulness and poor planning can frustrate and infuriate others. It’s why I take on too much too easily then panic because I feel like I’m drowning.

Why June is scaring me!

This month is a particularly bad month for me when it comes to my executive function and my missing OM. I’ve agreed to run three training courses (one is a full days conference) and as usual I’m scrabbling around last minute to get ready. I’m still writing materials for OM’s sake! Now I’m a perfectionist and have no fear; those course will be brilliant and I’ll pull them off like a pro. But it will mean late nights (think 3am finishes) and lost sleep to get me there. It will also leave my social energy completely drained because spending time with other people, especially lots of new people, is very hard for me.

Then there are my gorgeous boys. In between juggling H’s transition meetings to infant school, and L’s rehearsals for the school play and spelling bee, I’m trying to convince the local authority to contribute funding to L’s promised place at a fantastic local independent school – my superstar has been offered a scholarship but it doesn’t cover the full fees and we simply can’t afford to pay the rest. So I’m stressing because term ends in July and I need to have this sorted by then.

It’s also Fathers Day and I want to make it special for my much loved and somewhat overlooked hubby!

Then it’s L’s 8th birthday. Now to hear him talk you’d think he was planning his wedding! His expectations are sky high (my fault, I set a ridiculous benchmark in previous years when we had more time and more money!)

It’s also our Angel’s birthday this month. Pablo will be 9 years in Heaven on 25th June. 9 years! And it’s not just about finding him a suitable gift and planning a visit to the cemetery. It’s the inevitable pain of remembering. His loss never leaves me but in June it’s so much worse. I can recall so clearly every conversation from that time, every smell, ever physical sensation. And it hurts to remember. It’s draining, exhausting. It makes me want to hide from everyone.

And then of course there’s this blog. Because I feel so compelled to write and the process is so cathartic but I have no time! In fact I’m using up time blogging when I should be planning for all the other priorities I’ve been telling you about.

The moral of the story

So back to my missing OM. Back to the point of this blog. I guess what I want to say is, the chaos, the lateness, the forgetting, the losing things, the poor emotional regulation….all those things that may irritate you about me or the Autistic person(s) in your life; it’s not deliberate, we really are trying and we just need you to be patient. Be kind. Help, don’t judge. You can advise but don’t preach. Because I guarantee if you were inside my brain for even one day you’d run screaming back to your own and would give your OM the biggest bear hug when you get there 🙂

When you can’t see the wood for the trees…

Send help! Her OM’s gone on strike!!

Let’s talk Rainbows

Today I was at the hospital with my youngest who is undergoing assessment for autism. Everyone’s kind of sitting on the fence about it because our lovely H is highly sensitive, highly anxious, resists change and has sensory processing issues. However when he feels comfortable he is an articulate and engaging communicator and he has a phenomenal imagination which doesn’t sit comfortably with the ASC diagnostic criteria.

We agreed to continue monitoring him and to review his progress once he starts school in September – all well and good. Then the Doctor made a statement that made me catch my breath…’I usually find that people diagnosed later in life are diagnosed late because their presentation and traits are milder than those diagnosed when they are young.’

My heart: NO NO NO! Are you going to let her get away with that massively unfair and inaccurate generalization?

My head: Keep your cool Lizzy, don’t alienate this perfectly nice and respected Doctor!

Fortunately I stayed calm and replied ‘In my experience the people diagnosed later in life appear to have milder traits because they have become experts at masking and camouflaging those traits in order to fit in with the neurotypical world around them. In actual fact their difficulties may be severe but they have kept these hidden for fear of being judged.’

To be fair to the Doctor she did listen to my comments and I appreciate that professionals involved in diagnosis, work with frameworks, checklists, criteria, they work in black & white. But Autism isn’t black and white, it’s a RAINBOW 🌈. Each one of us is unique and whilst of course there are central common traits we have vastly different strengths and challenges.

I honestly don’t know if H is autistic. Some days I’m positive, others I’m not. What I do know is I don’t want him to become a ‘lost child’ like me. Undiagnosed for 42 years, confused, angry, awkward, misunderstood. Probably my greatest hurt over the years has been that feeling that no one understands me. People have misread my behavior, misread my intentions, judged me against their neurotypical rules which are not my rules! My brain is wired differently. I have my own ‘normal’ and it’s not the same as a neurotypical persons.

My life and my self esteem has improved immeasurably since my Autism diagnosis and to a lesser extent my bipolar diagnosis as I now have effective medication to manage my recurring cycles of depression. I don’t want to label H or force a diagnosis on him when he’s so little. Neither do I want to play down his difficulties and miss the chance to get him the support he needs for school.

So I will continue to love and nurture him, play with him, teach him and hopefully someday soon we’ll be able to reach a consensus on his neurotype.

In the meantime, please try not to see in black & white. Remember Autism is a rainbow, that all behavior is communication and that the child/adult/co-worker/employee you find awkward, weird, angry, blunt/rude, shy, may not understand your expectations and rules. So please don’t try and mould them to ‘fit in’. Follow their rainbow, it will be colorful, exciting and fun. Who knows, you may even find a pot of gold at the end of it !

The Baby Bump and The Bad Lump

Because you have to take the rough with the smooth…

So I guess I left you all on a bit of a cliffhanger after my first blog…Apologies for the delay in following up, it’s been half term and I’ve been rushed off my feet with the boys (L is almost 8, H is 4 – they love and irritate each other in equal measure). Now where was I?…

Significant Trauma 2:

In 2014 life was pretty damn good. L was about to turn 3 and being a June baby we’d organized a big outdoor party in the local park. My husband N and I had been trying for another baby for a few months and we were so excited at the prospect of giving L a sibling. Our flat was on the market and we’d just accepted an offer over the asking price, affording us a deposit on a family home with a garden in Worthing.

This is my favorite photo of L and I at his 3rd birthday party. I usually hate my photo being taken but this picture captures a moment in time when I was truly happy and in a good place mentally. In fact I think this was probably the happiest and most secure we’d felt as a family unit.

Two weeks later, everything changed. I’d been taking pregnancy tests daily (sometimes twice a day – OCD is an expensive habit) and we’d just found out I was pregnant again. That faint line on the test window meant the world to me and I was already thinking about baby names and imagining how L would take to being a big brother. Of course there was the small issue of a breast lump that I was having investigated, but I felt pretty invincible.

The Bad Lump

I’d had biopsy’s earlier in the month but this wasn’t the first time I’d had a breast lump and as a non smoking vegetarian with no history of cancer in my family, I’d barely given it a second thought. So when N & I arrived at the hospital laughing and joking to get my results, we never anticipated bad news. We were too busy planning our future with L and our new baby. That was until we got taken into the bad news room. Think armchairs, lily’s in a vase and a box of strategically placed tissues. Before the consultant opened his mouth, I knew. I was diagnosed with stage 3 breast cancer. They told me it was fast growing and there were signs of lymph node involvement. They wanted me to terminate the pregnancy and commence chemotherapy right away. It’s surreal because I don’t remember my husband’s reaction at all. I guess he was doing his quiet, shades of grey thing and holding everything in; heaven knows what must have been going through his head. All I remember is the way my heartbroken wails filled the room as I sobbed ‘what about my baby?’ A mastectomy and lymph node clearance was planned for in four days time (the blessing of having private healthcare through my husband’s work) and I was sent home to reconsider a termination.

On reflection I really have a lot to thank my Autism for in terms of how I got through the next 12 months. You see one of our super powers is the ability to hyper focus. So I decided to direct all my focus on our growing baby and to switch off the fear and panic I felt about the cancer invading my body.

A Story about Boobies

It seems only fitting as I’m about to describe having my breast cut off that I reflect on my relationship with my breasts.

I was a painfully shy and awkward teenager, very naive and self conscious. I hadn’t been prepared for puberty. Let’s face it puberty is tough whoever you are but for an undiagnosed Autistic young woman it was pretty harrowing. Periods made me feel dirty and smelly. Bras felt like torture devices. My brothers teased me mercilessly and I hated my changing body. However as I got older my breasts grew and grew! They were ginormous on my small frame but I started to notice that boys liked this and that other girls would dress to emphasize their cleavage. Even at 44 years old I still don’t know how to dress, how I should look, I don’t have a style. Back then I coped by copying others. I bought slinky tops and experimented with makeup. By my early twenties I was given the nickname ‘Boobies’. So it’s fair to say they felt like part of my identity and I saw them as one of my USP’s (unique selling points!)

Goodbye Bad Boobie

Now here I was at 40 years old and my USP’s were trying to kill me! I had so little time to prepare for the mastectomy that I didn’t prepare at all. I just wanted it off because I wanted the cancer out of me, I never had time to grieve or to think about the repercussions of such major surgery.

When I came round from the general anesthetic I’d been having a vivid, happy dream about a family picnic. But when I opened my bleary eyes and found myself in a curtained cubicle with drains coming out of my body I cried & cried.

‘It’s ok love’ said the well meaning nurse ‘it’s just the anesthetic , it makes you all emotional’ and I remember thinking ‘I’ve only got one breast. I’m a monster’.

I was in hospital for 4 days I think. At first I couldn’t bear to look at myself. N my husband helped me shower and I refused to look down or into mirrors. But then my beautiful sweet 3 year old L came to visit me and he said ‘Mummy can I see where the doctor snipped your boobie off’ and I thought, I have to look if L is brave enough to look. So we looked together and he said ‘Ow, that looks sore’ and I think I started to mentally detach from my body, from my physical self at that point. I didn’t look like me anymore so I stopped thinking of my body as mine. That probably sounds mental but I am mental, remember? And maybe it made everything easier to disassociate like that.

Limbo Land

The next few months were a blur. I refused to start chemotherapy until the second trimester when it is known to be safe in pregnancy. So suddenly I had 12 weeks of being in limbo land. I didn’t feel ill, I certainly didn’t feel like I was battling a deadly disease. My husband took on the role of cancer fighting dietician and began making me a daily fresh super juice of vegetables and fruits to boost my immune system and help our growing baby get strong. It was a labor of love on his part and as much as I was grateful, my word those juices tasted bad! Some days were better than others but beetroot, cabbage, watercress?! Those things should not be juiced in my humble opinion. There were days I kept that juice down. And days I vomited it straight back into the kitchen sink. But we persevered, hubs and I, because we wanted me to live and our baby to live.

So let’s talk prosthesis. Now remember as an Autistic woman I am hyper sensitive. I can feel the bracelet on my wrist, the shoes on my feet, every itchy label on my clothes. I can’t bear anything itchy or tight against my skin or anything that makes me sweat. My one remaining breast that started out as a FF cup was rapidly growing with the pregnancy and the lady at the specialist bra place measured me as an H cup! She proceeded to hand me a giant, flesh colored, wobbly dome of ridiculousness which she attempted to squeeze into my bra. Of course my bra wasn’t a mastectomy bra so had no supportive pocket. And although the lady had prosthesis in my size she said they didn’t have the special bras in my size…….

I think I managed about 2 weeks with that bloody thing. It was so big, so heavy. It made my shoulders ache and my bra strap cut in. I felt like a ridiculous fraud because nothing I did seemed to make the prosthesis sit parallel to my remaining breast. So I chose practical. I chose freedom. I chose to go without. To some it might seem horrible to go around lopsided with an H cup on one side and flat on the other. But I was comfortable and I ignored the stares. I even think I managed to forget half the time. I do remember tearing strips off of a random guy in a pub one Sunday lunchtime who I was convinced was laughing at me. ‘Do you think this is funny, do you?? I shrieked while N guided me to our table before I could embarrass myself any further.

The Dreaded Cold Cap

I was due to start chemotherapy in the September when I was 14 weeks pregnant. I was desperate not to lose my hair which probably sounds very vain but my hair was my only other physical USP in my opinion. I had long blonde hair like the Timotei girl on the shampoo adverts. I discussed my concerns with my oncologist, R, and he recommended I ‘cold cap’. The theory is you wear this skin tight fabric helmet that is strapped tight under your chin, during each session of chemo. Coolant is pumped around the helmet and literally freezes your hair follicles so the chemo can’t get to them. One word. Ouch! I mean seriously, it is a torture device. Sensory hell for even the most chilled out person (no pun intended). Plus it looks bloody stupid. Each chemo session I would sit there clawing the arms of the chair, stuffing my face with chocolate, feeling like any second I would have to rip that damn cap off. But you know I never did. I stuck it out. Because I wanted to keep my hair. And I did keep my hair, well most of it anyway. I even kept my eyebrows and eyelashes. Ironically 3 days after finishing my last chemo I woke up on my 40th birthday and my eyelashes and eyebrows were no more! Just tufty pufty whisps of stray eyebrow and stubbly patchy eyelashes. I was heavily pregnant by this point, 32 weeks with a glorious bump and I was so very grateful that all the scans showed H was thriving. But I mean seriously, to lose my eyebrows and eyelashes on my 40th?? Someone up there was having a right laugh at my expense.

Welcoming our Warrior

4 weeks later at 34 weeks gestation H was delivered by planned Caesarean section. We had to get him out early because my oncologist was anxious for me to start radiotherapy which can’t be done while you’re pregnant. We knew H would probably need to stay in special baby care for a bit but to be honest I was so desperate to meet him I don’t think I could have lasted another day. L had been delivered by emergency caesarian so I was out cold and missed his arrival. Therefore it was such a treat to be awake for H’s birth. My only regret is that I wasn’t able to keep my knickers on! In my typical Autistic naivety I thought as he was coming out of my belly and not my lady bits, that I’d be able to keep my pants on…I must confess I had developed a crush on my Obstetrician, a silver haired hero of a man who’d scanned me every two weeks during the pregnancy. The thought of him seeing my lady garden was rather mortifying but my husband had a good laugh about it!

And then we were four, but the Boobie was no more!

And this is where I’ll sign off for now. It’s almost 1am and I’m back on school run duty tomorrow. So I’ll leave you with the happy image of us cuddling our incredible tiny warrior H. He needed a little help breathing & feeding but he was a fighter like his Mummy and fit as a fiddle.

Do come by again if you’d like to hear more about my journey with Autism and Bipolar and if you are enjoying my blog please consider following me. Thank you!

Is anyone out there?..

People say you should speak out if you have mental health problems. That you should confide in those close to you. That you should ask for help. But what if those close to you can’t help? What if those people are part of the problem? Because mental health problems are polarizing. Not everyone wants to save (or be saved). A lot of people find mental health issues unsavory. Unattractive. Weak. Irritating. Inconvenient. So when a highly vulnerable, unstable person with already fragile mental health confides in someone close to them and that person belittles and begrudges, makes personal or derogatory comments, what are you supposed to do? Where are you supposed to go?

To be clear, I’m not trying to point the finger here. I accept and appreciate that it can be a huge burden to support someone with mental health issues. It can be confusing, time consuming and emotionally draining. And because mental health issues rarely (in my experience) go away for good, that can feel suffocating for the supporter. Especially if they are supporting an Autistic person with mental health issues like me. Which is why my husband is regarded by most as a living Saint for coping with my special brand of crazy for the last 15 years…

When feelings run deep

Now, there are lots of misconceptions about Autism. One of the most frustrating is that we don’t have empathy, that we don’t have feelings. Let me tell you that’s a crock of shit. We are some of the most highly sensitive humans on the planet. We feel things so deeply, so strongly that it can physically hurt. Our happiness is euphoric, our sadness devastating and our anger, explosive. Rejection (perceived or actual) cripples us. Injustice consumes us.

So what happens when a highly sensitive, emotionally vulnerable, socially awkward, Autistic person encounters an upsetting situation or event that sends their mental health into free fall and the person or persons who usually support them were the one(s) who actually pushed them off the side of the cliff?……….

After the freefall

Your GP can issue meds to help you cope (assuming you’re not medicated already). Now I’ve been medicated for the last 7 years and I would not be alive without these meds. Fact. I’ve tried to come off of them twice during that time, slowly and sensibly, once to get pregnant and once because of pressure from others who’d managed to wean themselves off and live medication free. And I’m happy for those people, I really am. But I’d be lying if I didn’t admit it grinds my gears the way society views antidepressants and how it’s celebrated when someone comes off them. Because I tried twice and turned into paranoid psycho bitch from planet Evil!

Let’s talk therapy

If your mental health issues are judged to be mild to moderate (this is a medical classification which in my opinion, doesn’t necessarily reflect the hurt & suffering of the patient), you can refer yourself to ‘Time to Talk’ for therapy. But the waitlist is many months long and they have a very specific remit (‘Bipolar? Too severe! Sorry love your names not down you’re not coming in’).

On the one occasion the Sussex Mental Health line picked up my call (after many months of only hearing an answerphone message to call back later) the woman told me to stop crying, run a hot bath and eat some comfort food, because ‘there is no-one coming to help you right now’. Firstly, this is NOT good advice for a secret binge eater. Secondly, she left me completely without hope because when I stopped crying enough to breathe I challenged her – ‘so you’re telling me unless I try to kill myself no one will help me?’ ‘Basically yes’ she replied.

I’ve even called the Samaritans once, which for some reason felt desperately pathetic – I guess because it symbolized that I had no-one else in my life to talk to except a stranger on the phone. The lady who spoke with me was patient, kind, gentle. She listened. But what I needed was answers. I was panicking. Lost. Stuck in a vicious cycle. I needed practical advice. A plan. And of course the Samaritans can’t do that.

Time to rewind…

I can track my mental health problems, specifically my anxiety and OCD, back to when I was a young child. I can remember hanging over the banister at bedtime yelling downstairs ‘I love you mummy darling. I love you. I love yoooooou’ on repeat because I was terrified she wouldn’t be there when I woke up. My father (let’s call him Mr Domestic Violence and the reason I was so scared Mum would disappear) would yell back ‘shut the fuck up’. Then I’d creep into my brothers room and stand there in the dark, trying to hear their breathing. If I couldn’t, I’d put my fingers in front of their noses and try to feel their breath. Because I had to check they were alive before I could go to sleep. Eventually I’d clamber into my bed and start counting out on my fingers ‘I am going to have a dream. I’m not. I am. I’m not’ again and again until I landed on an ‘I’m not’ finger that could be trusted. Because vivid and violent nightmares have plagued my whole life and as a child, sleep was not a safe place for me. As an adult this has improved but the night terrors still come, to the point my husband is woken by me crying in my sleep, or I startle awake in utter terror convinced there is an intruder but I can’t move because I am physically paralyzed as if someone heavy is laying on top of me.

As a teenager I took myself to the doctors, sobbing that I thought I was ‘mad’ because of the violent, emotional meltdowns I regularly experienced. (I was not diagnosed as Autistic until I was 42, the lack of early diagnosis compounded my confusion and sense of isolation with regards to my mental health). The doctor just laughed at me and said I couldn’t be mad because mad people rarely acknowledge their madness. That’s when I started to use alcohol and food as a coping mechanism. Not on a daily basis. But the alcohol became a prop to survive social situations and enable me to be the friendly, gregarious, slightly outrageous friend I felt I was expected to be. The binge eating was my dirty secret, something that both comforted and repulsed me.

In my mid twenties when my first marriage ended I fell into a deep depression. That was the first time my GP offered medication to manage my low mood. But after 2 weeks of popping Prozac I succumbed to peer pressure and stopped taking them (‘tablets won’t help, they’ll just make you a zombie, only you can pull yourself out of this’ etc etc). And so I struggled on, self medicating with alcohol when required to socialize, scoffing mars bars and cherry bakewells in large quantities when no one was looking. That’s not to say I didn’t try and help myself. I enjoyed exercise and maintained a healthy weight. I read self help books in my desperate quest to find out WHY I had anxiety and depression. I even remarried, someone who professed to love me and (by his own admission) wanted to give me the happy life I deserved after my traumatic childhood and adolescence.

Ironically it was a series of traumatic events that occurred during my second marriage that started me on the yellow brick road to answers.

Significant trauma 1:

In 2010 we lost our first son Pablo to a rare lethal chromosome disorder during pregnancy – a son we’d planned and desperately wanted. One day I will tell his story properly. What I can say now is that his death was the single worst thing that’s ever happened to me. As an Autistic woman with hypersensitivity I can still feel his body slipping out of me 9 years later. I lost a massive part of myself when he died and a divide opened up between my husband and I because he just didn’t feel what I felt. His grief was so different to mine. Mine was the colour of fire, the sound of explosions, it gave me physical pain. The guilt, the regret, torturing myself with philosophical questions about where Pablo’s soul was and if he’d return to me. My husband’s grief was shades of grey. It was quiet. Private. He forgets easily and focuses on the future where as I feel every stabbing pain of my past like it was yesterday.

The NHS bereavement counselor I saw after Pablo was kind. She listened. I cried. Her abstract questions and ‘games’ (placing plastic figurines in a sand tray, sifting postcards for pictures I could relate to) were lost on me. I threw myself into tending his grave and trying to get pregnant again.

And then comes a rainbow

In 2011 my rainbow L was born. I had never been so happy. He was everything I’d ever wanted. Suddenly I had this tiny human who loved me unconditionally and it was so easy to give myself over to him completely. I had never experienced such love and I felt like my soul was finally starting to heal.

What I failed to notice was that my anxiety and OCD had skyrocketed. My safety related rituals and behaviors controlled every aspect of my day. I didn’t trust anyone else to care for him and would supervise every nappy change done by Dad or Grandma like I was their Chief Examiner in a life or death test. I was terrified L would stop breathing and when I settled him each night I’d count kisses and the flashing light on the monitor, recite a mantra about his future, one more kiss, one more stroke, over and over and over until I felt it was safe to leave the room. Meanwhile my husband was quietly suffering. He felt alienated, rejected. He had gone from adored to invisible. My high anxiety meant I would frequently snap and berate him, leaving him feeling not good enough.

Home truths

I remember around the 6 month mark, in my bubble of happiness, so in love with our son, I asked my husband what he thought about trying for another baby. His reply is seared on my heart… ‘I’m never going through the last 6 months again’.

I was beyond devastated. I couldn’t believe that he’d experienced things so differently to me. Once again I started to question my sanity. Am I mad? Is what I’m experiencing real? This sent me into a deep depression and eventually when L was just over one year old, I tried again to get professional help. This time my husband went with me. Whilst the GP was sympathetic, he openly admitted that he didn’t know how to get me the help I needed. He wanted to refer me to mental health services but he didn’t know who to refer me to. I can’t describe my frustration and hopelessness at that point. The way I saw it, if a qualified doctor didn’t know how to help me then maybe there was no help. Thankfully, my husband located the details of a private psychiatrist and so began my sessions with Dr R, a man who has rescued me from self destruction and mental annihilation on multiple occasions since.

God bless psychiatry

It made the world of difference seeing a psychiatrist and I was quickly diagnosed with depression, anxiety, obsessive compulsivene disorder (OCD) and symptoms of post traumatic stress disorder (PTSD). Dr R immediately put me on medication for my depression and anxiety and I began a program of CBT sessions (cognitive behavioral therapy) to address what the hospital saw as the priority – my OCD.

Of course at this point my Autism diagnosis was still 5 years away. If they had known I was autistic it’s questionable whether CBT would’ve been used. But my experience overall was positive because for the first time I was able to revisit my past and I started to recognize that my distrust of others, fear of rejection and need for control stemmed from my childhood and adolescence. In truth, these things stem from my Autism first and foremost, but my experiences growing up definitely compounded my issues included my poor emotional regulation.

Happy times aka the calm before the storm

And so my husband and I entered into a period of relative stability. I was calmer and kinder, he was more patient and understanding. L brought us intense happiness and we could focus on loving each other as a couple and as a family. My mental health felt good and I actually started to like myself and to build tentative friendships with work colleagues and extended family.

That’s when God decided to throw me another massive curveball, because apparently he only tests those he thinks can cope (she said through gritted teeth)…