Husband Promised He Would Love And Support Her No Matter What Her Diagnosis Was.
Story by Wenna Fullerton
As my phone began to ring, I noticed there was no caller ID. My heart skipped a beat, my throat tightened, and I froze. I knew this was it. Why were they calling now? This was not a good a time. I answered the call and the woman said she was calling from the assessment clinic and wanted to inform me that my report was ready. I felt the blood rush from my legs to my head. I was walking through a busy street in my hometown having just stepped off the train home from work. The woman asked if I would like to know the outcome over the phone. Before I could think and in complete disregard to the hundreds of people that surrounded me, I said yes. She told me the report concluded that I had Autism Spectrum Disorder (ASD).
Tears streamed down my face. She asked how I felt about the news and I couldn’t speak, I took a moment to catch my breath and say, “shocked”. I’m not sure why I said that as I wasn’t but the relief I felt was unreal. I had waited for what felt like forever to hear those words. The conversation ended quickly, and I immediately checked my emails for the report. The report started with a brief background and stated on the first page I was autistic. More tears continued to roll down my face and I stood there for a while absorbing this new information.
I grew up feeling like I was on the outside looking in. Surrounded by brothers I thought I was different being the only girl. The world seemed like an endless show that was too hard to watch. People made it look easy, effortless in fact. How did they know what to say? How to act? The loneliness I felt as a child was unbearable. I knew I shouldn’t feel that way, but I just assumed it would get better. I had a loving family and I had one friend, a boy I’d grown up with. He was laid back and funny. We would play cars for hours, lining them up in colour and size order. The girls in my class at school could sense I was different. They mentally and physically abused me. The isolation got worse and by the time I went to high school, I was full of anger and confusion.
What was wrong with me? It was there I learnt to mask, and I don’t think I’d be here today if I hadn’t. I’d come home from school exhausted and emotionally charged. It passed as normal teenage behaviour, chaotic and turbulent. My grades went from being excellent and top of my class to below average and failing. I didn’t have the energy to excel academically anymore, I was too busy learning how to fit in and it was something that challenged me more than anything I’d ever tried before. I taught myself social cues, I studied facial expressions and body language. I researched and obsessed over it and I became a master at it. My heart and soul went into socialising and learning how to make friends, I just wanted the loneliness to stop and I watched how my brothers made friends so easily with envy. It did not feel natural, but I thought I’d crack the mystery one day and work out a method of making friends, maybe I was missing something.
By the age of 14 I had a large group of friends and I felt all my hard work had paid off. I rarely went home; I knew going back to my safe space I’d implode. My mask couldn’t slip, I’d put everything into keeping it there. I thought I was safe from myself, but I had already done so much damage to my mental health by this point by internalizing so much emotion, the cracks started to show. I got into fights, I’d given up on education and in return it had turned its back on me. My friends started to experiment with boys and drugs, neither interested me much. I did have boyfriends but mainly out of curiosity and to see what the fuss was about but once I was bored of them, I was done. I was searching for a connection they couldn’t live up to. I was told I was neurotic, aggressive, crazy, cold and difficult. I was failing on an epic scale. I look back at that time in my life and wish someone like me had reached out as I think things would be very different. My parents have always given me the best support and advice but when things got too much at 15, they sent me to a therapist. She was nice but she couldn’t crack me. I told her what she wanted to hear because it felt pointless telling her how I really felt.
My mask was on firmly, but I was screaming behind it. I left school at 16 and started college but dropped out after a few months. Being away from my friends was easy but holding friendships together was not. All my hard work I’d put in for years, slipped through my fingers. I didn’t know the rules anymore. Friendship isn’t like riding a bike for me. I could practice all I wanted to but as soon as I took a break from it and distanced myself, it all fell apart. They all drifted away apart from one. She’s still my friend to this day, never judged, only supported and accepted me. She is the sister I never had, and I will forever be grateful to her.
At 17, I started working and it was good for me to have that focus. My mind could focus for the first time in years as I had a strict routine where I could run on auto pilot, becoming increasingly numb as time went by. I attempted to fit in with my peers, however this was not enough, and I remained an outsider. The same year, I met my husband. He was tall dark and handsome (He still is) and his voice had a comforting tone to it that instantly made me calm. For the past 14 years, through the dark and light days he has always been by my side. Except for my close family, he is the only one who saw the real me from the start.
Through the years despite having an amazing family, my best friend and my husband my mental health deteriorated significantly. In 2008 we welcomed our son into the world and I soon isolated myself from the world completely. I was diagnosed with depression, anxiety and OCD. I received more therapy, but it didn’t work out and things continued to get worse. Medication was the next step, but it meant I spent most of my early twenties feeling like a zombie, numb but aware of the pain of existing. After a few years I stopped taking them and lied to myself that I was better now, I just couldn’t take the numbness anymore. 2012 was the year our daughter was born. I had a rough time bringing her into the world and my anxiety continued to grow significantly worse.
I knew I needed help and it was more than a second round of post-natal depression and PTSD. I felt guilty for being a burden to my family and my husband, for not being the mum I needed to be for my children. I saw a new therapist and she told me it was ok to be me. She gave me permission and I started to let her in, letting her just see beneath the surface. Simplistic but powerful, nonetheless.
Over the next few years, taking her advice, I gradually removed things from my life that made me feel worse. Toxic relationships with family and friends. I started to exercise to help my anxiety but still found it daunting walking into a gym full of people and too much noise often leaving halfway through to have a panic attack. I assumed I was just an introvert that had trust issues with people I didn’t know. I started to let my mask slip and it allowed me to achieve more. I went back to college, started on my career path and focused on trying to better myself as a person.
In 2016, one of my brothers was diagnosed with Autism Spectrum Disorder (ASD). We did not know much about Autism until his diagnosis, but we learnt so much about how we could support him and how every autistic individual is different. As our family learned more about Autism, many of the traits made me think how much it sounded like me. I didn’t like change, sensory issues such as refusing to be touched unless it was to hug and kiss my children or if my husband gave me warning of an incoming hug. Loud noises startled me; bright lights sent pain rushing into my head leaving me unable to focus. Being around people left me feeling drained and hungover afterwards. I couldn’t make friends easily either and certainly could not maintain a friendship well. I always put it down to my personality mixed with anxiety, yet it affected me every day and I was still struggling to figure myself out.
Although this should have sounded alarm bells, I dismissed the similarities between my brother and I and thought we might be similar because we are siblings and I couldn’t possibly be autistic. When you read about autism online and in books, the majority is written by neurotypical clinicians that only explain about how it presents in boys. I accepted I didn’t quite meet the criteria and I would have to accept that I had extreme anxiety.
Over the next two years, panic attacks were a daily occurrence. My career was suffering as I moved job to job, not settling in well and being unable to perform well due to exhaustion. My body warned me physically with migraines, IBS, dramatic weight gain and weight loss from abusing my relationship with food and I was hospitalized with several infections due to how stressed I was. I was internalizing everything and by 2018, I reached breaking point.
Out of pure desperation I went to see my doctor and broke down to him. Through my tears I explained how I couldn’t cope, things were just too much and I knew deep down it was more than anxiety, OCD and depression. I asked to be assessed for autism and explained about my brother followed by showing him a list of characteristics on the autistic spectrum that I identified with. By this point I had finally found articles and research about autistic girls and women and how it presents differently than in boys and men. I told him how many times I’d broken down in public over someone brushing past me, loud noises or my fears of people looking at me. How I felt deep emotional pain for others, even strangers and how I’d fixate on how I could help them. The intrusive thoughts that crippled me mentally, but I was too ashamed to speak of. How I would mimic behaviour, study body language and how I would mask. I told him how masking was exhausting but I had to do it to survive.
He listened to me intently and told me he was quite shocked at what I was saying and every time I’d seen him over the years I always made eye contact and came across confident however he admitted he was not an expert in Autism and would be happy to refer me to the adult mental health team who would start the assessment process. He also explained it may take up to two years to get a diagnosis. I thanked him through my tears and left.
I felt drained yet relieved I had finally told someone the whole truth. Things even my husband didn’t know in fear I’d worry him but that night I told him everything and he told me he would always love and support me no matter what. Eight months later I received the paperwork to complete with questionnaires about my childhood and current problems. I then received confirmation that I would be assessed for autism and it started to feel real. I was told it would be around eight months for an appointment. I was to be assessed by a psychologist and psychiatrist who specialized in neurodiversity. Suddenly I felt terrified and the days dragged causing my mind to race and over analyse everything. I doubted myself and if I was clinging on to the hope of an autism diagnosis because I just couldn’t accept who I was.
Being stuck in this strange limbo I had to try and help myself through it but I couldn’t do it alone and although my husband has always encouraged me to talk to him, I feared I was putting a huge strain on my marriage. In the months leading up to my assessment I took a second job as a Workplace Assessor, for an autism charity, ensuring autistic individuals received adjustments, bespoke to them in the workplace, to enable them to reach their full potential and lead a fulfilling work life.
The exposure to other autistic individuals opened my eyes to the daily discrimination they receive and ignorance around autism. The training I received was invaluable and helped me to understand autism and myself better. The next step before my assessment was to approach my close family and my best friend about a possible diagnosis. These were my safe people but with no certainty of how they’d react it was a risk. I trusted them and for me trust didn’t come easily. It was a daunting experience, but they were all extremely supportive and agreed it would make sense if I were to be diagnosed.
The day finally came for my first assessment. I met with the psychologist first. We spoke about what my challenges were and did some tests then he asked me questions. Even though he explained there was no right or wrong answer, my anxiety was heightened but it meant I was unable to mask and could be myself. If I could give anyone advice it would to be your true authentic self during your assessment. We talked some more about my family, relationship with my husband and friendships. It lasted for two hours and I felt relieved when it was over and had to take a nap, I never nap but it had it sucked the life out of me. I then waited two weeks for my second assessment with the psychiatrist. I’m not sure why but I felt more nervous about this one. It lasted for three hours and like before I felt uncomfortable, particularly because I didn’t feel at ease with the psychiatrist. She came across as condescending in her attempt to sympathize with me like I was a victim. We spoke in depth about my childhood and went through what felt like a million questions. By the end of it she explained I would now have to wait six weeks for the report and a third clinical team would now review their findings. She could have said six years, it would have felt just as long. I’d waited over a year by this point, but the final stretch felt endless and I was not sure I had the strength. The waiting was excruciating and I’m not sure how I would have got through it without my husband.
Unfortunately having the ability to hyper-focus on something has its negatives and autism seemed to be on my mind day and night to the point as he would attempt to fall asleep, I would still be talking about it as it consumed my thoughts. He told me I would still be the same person I had always been no matter the outcome. Then that call came and everything changed, and he was wrong. The validation, self-acceptance, confirmation and realization were all written in that report. It took time to digest and to process in my head.
I was so happy it was all over and I finally had answers but then the numbness kicked in. I was still living in the past and attempting to make sense of everything and I started to feel angry and frustrated over why this had not been picked up before. Not with my parents, they tried, they really did. I was angry with the doctors, teachers, therapists and with myself. Why had we not seen it for so many years? Was it the portrayal of autism in movies and tv shows that stopped us? Was it the existing lack of understanding and constant misconceptions about autism? I was 30 years old and felt like so much of my life had been a lie and unnecessary struggle. I battled with this for some time eventually accepting the past for what it was and how it made me who I am today. Autism is not something I have, it’s not an accessory, it’s who I am. I always have and always will be autistic and I’m proud of that.
Finally, being at peace with myself, I had a new calmness to me that I had never experienced before but my diagnosis now felt like a huge secret and I felt more alone than ever. I knew I would be ok, but I thought I could help others by speaking up. I saw how so many people battled for their children to be diagnosed and how girls were side-lined and diagnosed with other conditions, but many would grow up without answers, lost and alone. The lost girls. How autistic teenagers were left unsupported and the support system just seemed to stop completely at adulthood. The suicide rate in autistic individuals is three times higher and it’s because many have nowhere to turn and with little understanding about autism, it has left people in desperate situations. Knowing this makes me want to scream and fight with everything I have. I thought I am lucky enough to have the support, the resources and information so I’m going to stand up and be that voice. I planned to disclose my diagnosis along with real information about autism on my social media platforms. It was only my experience but if I could help at least one person, it would be worth it.
I built up the courage to post about being an autistic woman and the comments and messages I received were incredible and empowering. People messaged me to thank me for being brave and putting a better explanation about autism out there, how they were thinking about being assessed and what I had said made so much sense to them. How misconceptions about autism made them afraid to disclose at work or to friends, even family. Some simply asked more about my experience, eager and curios to understand more. Disclosing publicly gave me huge relief and will allow me to live my life to its full potential. It was just a small step in my big plan. I want to carry on being a voice for those who need it and create a better understanding. I have been asked to speak at a conference in a few months for autistic women. I will continue to help others and, in the future, possibly set up my own business supporting autistic individuals to achieve fulfilling lives and access the support they need. One day I would like to even write a book to reach those who are lost and need to hear “You’re not alone”.