Autistic Women Everywhere Sharing Our Lived Experience of Autism Worldwide

Sarah Vanis, Mother & Wife

Author,  Teacher,  Therapist

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My Autism diagnosis allowed me to breathe. Stop judging what you think you know about Autism and just listen and watch. When you judge, you miss the person and damage the fine threads that have been established for social connection in a neurotypical world.

Sarah Vanis  

Grad Dip PsySci, Adv Dip Ayurveda Practitioner, Dip Classical Yoga, DipEd, BSocSC (YWk), DipComWelf, DipCommDev, DipCommYWk, DipVisArt, Cert IV TAE, Chef.

Three Christmases ago now, I broke. I thought I was going crazy. My eating was getting more restricted and I diagnosed myself with a re-emergence of my past eating disorder. At Christmas, this isn’t much fun. All the good food….I couldn’t touch it and I was desperately trying to hide this from my children.

It also didn’t help that this was the first Christmas my family of origin had not spent Christmas with us, and neither had my family in law. I had this ideology of Christmas being a family time. Laughter, food, alcohol. That year brought tears and restricted eating for this dry alcoholic. 

For the first time in 20 years, I felt like I needed help. I ended up contacting the local hospital and was admitted as an outpatient in the eating disorders clinic. This started a roller coaster of medicated chaos. I was put in anti-psychotics and re-diagnosed with Borderline Personality Disorder (BPD) on top of an eating disorder. This diagnosis is full of mental health stigma and I was quickly booted out to cope in the public health care system the best I could.

I researched everything I could about BPD. I felt like a lost cause but I was going to fight to cure myself and not affect my children. As a survivor of childhood trauma there was absolutely no way I was going to damage my children and I had a goal – the buck stopped with me.

I fought hard. I agreed to be compliant with medication after 20 years off it. 20 years ago I had been an emaciated Anorexic in and out of hospital. Now I felt like a failure who was masquerading as a Teacher in Yoga and natural therapies with a dirty secret. I was on medication and a loser.

Again my research skills came in handy. I looked for a psychologist to help me out of this mess. I found someone and started weekly sessions. I found a Dialectical Behavioural Therapy Group (DBT). This was proposed as the ‘cure all’ for DBT. It didn’t work.

On my very first session I mucked up my timing. I arrive, online, half an hour late. This was Covid time and group sessions were online. Chat messages were flying back and forth and I couldn’t read and keep up with the session. Some cameras were on, some were off. All people were local. I asked if the chat could stop. All hell broke loose and I was accused of not being a team player. I really didn’t understand what I had done wrong.

In the end I got kicked out of the group. They even refunded my money. This broke me further. I didn’t understand the rules and if I couldn’t be helped from the one form of therapy that helped cure BPD what hope did I have?

My Therapist suggested I get assessed for Autism. What a joke. I had just come to grips with a BPD diagnosis now I was to be assessed for a disability? No way. My mother was a Maternal & Child Health Nurse. Surely she would have picked it up?

In true Autistic fashion I needed to know now. I researched, once again, and contacted every therapist I could to do an assessment on a middle aged female. After 4 sessions it was confirmed. I was Autistic. How Autistic though was another thing. I was assessed between level 1 and 2.

This didn’t work for me. I was either Level 1 or Level 2. Which one was it? I continued to see my Therapist who helped me work through my Imposter Syndrome, anger and disbelief. So I had a disability. Now what?

Things weren’t right. In all my research I recognised traits of Autism in all of my three children. I read. I documented. I presented this information to my husband. Nope. No way. He had a wife who had BPD, now Autism and now I was trying to diagnosed my three children as well?

Turns out I was right. All four of us are Autistic. But I still needed to know what level I was. In between doesn’t suit my brain. I was re-assessed by a different therapist. The verdict- Level 2 alongside Post Traumatic Stress Disorder from late diagnosis, an eating disorder and Premenstrual Dysphoric Disorder (PMDD) which is basically PMT on steroids.

What was the crux that broke the camel’s back? Complete denial by my family. I was blamed. I was the black sheep. It was easier to blame my need for approval and lack of social understanding on my mental health. Except I wasn’t crazy. I was normal, just a different normal. For over 43 years now I had tried my hardest to behave like a good girl. I had tried to talk. My Dad was probably undiagnosed Autistic. His meltdowns when I was growing up were targeted at me.

Constant conflict with my mother didn’t help. I had meltdowns but they were ignored. As a teenager I would go into my parents closet and pull everything out. No one said anything. My extended family turned their back saying I was a naughty little girl.

I just didn’t fit. When I found my husband I was delighted to be part of a new family. Except somehow, a few years later, my husband’s family and my family became friendly and forgot to include me. The lies, the betrayal, the mistrust, I just couldn’t understand. I tried to talk but was called calculating and cold. But I was so careful in my communication.

After 43 years I broke down. The last 2 Christmases have been hell. Last year at the last minute the family bailed because they were still upset with me. From 2 years ago. My kids were crying. This year, I broke even further. My carefully planned Christmas was to be in a hotel with just my immediate family. Before this, we visited extended family. Big, huge mistake. After 3 days of solid interaction my kids needed a break. When I dared to speak up I was attacked. Autism was apparently my excuse for bad behaviour.

Autism is not bad behaviour. My Autistic meltdowns looked like bad behaviour. I was loud. I was expressive. This was, apparently, confronting to people but I didn’t recognize it and I didn’t have control. I actually thought I was communicating really well.

 

My diagnosis of Autism helped me to respect myself. I was no longer at the mercy of family judgement. Instead, I concentrated on learning strategies to cope with meltdowns, and even better yet, ways to recognize when I was getting triggered before a meltdown.

 

I learned that it is actually acceptable to like my own company and not have a huge amount of friends. Being diagnosed with Autism challenged thinking patterns of how I had to be. I recognized that I hated eye contact and my communication is often calculated and pre-planned.

 

Autism has helped me let go of the mask of pretense. Timely, because I cant hold the mask up anymore. As I got older, it became harder. I have not lost my special interest in people watching. Instead I have become more hyperfocused and now study psychology. I read research papers and try so hard to let go of the pain of being misunderstood for so long.

 

I am still on a journey. After years of trauma I have moved from grief to anger to complete disbelief. I found a therapy team to help me work through this. And the support of a great husband who sees me for me and will patiently reassure me that yes, I do have Autism, I am not making it all up.

 

Most importantly, I learned that Christmas for my immediate family will now be downtime. Slower pace. Less activity. Reduced stimulation. And you know what, I am fine with this.

Sarah Vanis  

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