Driving in the car, I feel a hand take mine and squeeze. I am anxious and he can see it.
“How are you feeling?”
He knows the answer but it’s something to break the silence.
“I feel sick.”
“I feel sick because I’m terrified it won’t be what I want to hear.”
He nods again.
He knows how I have struggled. He knows my past, and for the last 24 years he has travelled the journey with me; years and years of never being in touch with who I am, desperately grappling, searching, trying so hard to find where I fit in the world. Years of never being able to hold a job. Years of seeing things that people can’t see and not understanding why. Years of trying to control everything in my life, organising, labelling everything to the point of being called OCD. Years of a crippling inability to cope with change. Years of a turmoil that has been ferocious inside my brain, yet desperately trying to fight my way through, to think more positively, to adapt to a way of living that I cannot seem to grasp, yet seems to come so naturally to others.
Accepting the futility of it all, suicidal ideation has become my bed mate and I know it terrifies him.
3 months ago he begged me to seek help. Help won’t help, I had replied. I am weary of psychologists and doctors who do not understand, who encourage medication and who simply cannot identify what is wrong with me. None of it helps. I am beyond help.
I am slipping into the abyss. He knows it, and he is frightened. Don’t go there Sarah, please. It’s too hard, I reply. Simply too hard.
It takes another couple of days for him to suggest an alternative. He waits until I am having a good moment – fairly rare these days – and springs it on me. He thinks I am on the spectrum. He’s sure of it. I look at him in disbelief. “You’re surely joking.”
A friend of mine was diagnosed last year. She was 45. I would never have guessed. My own bias and stereotyping prevented me from seeing how obvious it was, when you peeled back some laters. She had been struggling all her life.
Moments later: “Do you really think I am on the spectrum?”
“I do,” he says, “and I think it’s important we explore it. I cannot lose you Sarah.”
I speak to my friend who was diagnosed and ask for the name of the psychologist. Psychologists not only sympathetic to, but who are trained well enough to acknowledge and diagnose, female adult autism are rare. I get a referral.
My first meeting with the psychologist I felt sick too. She is much older than I thought she would be and she had a wealth of experience and knowledge. She is also deeply kind. Ever vigilant for any sign of judgement, I sense none with her. She draws pictures and explains what autism is, and how it presents in girls and women – very different to boys and men. She explains the process of assessment – lots of questionnaires, interviews, hopefully some evidence that it has been lifelong. She asks if I have school reports. My mom had saved every single report from when I was 4 years old, I reply.
I do the questionnaires, and he does his bit which questions how he perceives things to be with me. I send them with the reports. She emails me to say how sorry she was that I have had such a difficult time of it. I cry. Compassion never experienced before does that to a person.
Eight weeks later, we are standing outside her office. He holds my hand as we walk in. He had offered to go with me. I refused at first, but he insisted it would be good to have the support. We walk into her office and sit down. The whiteboard is still there and her shelves full of books about autism and Aspergers, though of course it is no longer Aspergers.
“Let’s take a look shall we?”
She pulls up the results on the screen. Blue block on top of white block with two seperate lines with dots on them.
“The blue is where we need to be for a diagnosis of autism, Sarah.”
I look at the screen, the top line with dots is high in the blue, the bottom line is part in the blue and part in the white.
“What this tells me is that you have an incredible masking ability, Sarah. You are struggling massively, but you work hard so no-one else will know. Not even your husband, though of course he does suspect,” she looks at him and smiles as he nods. “You are the proverbial duck swimming along, seemingly so calm on top of the water, but frantically trying to keep afloat below.”
She progressively moves through the assessments, each one is the same. She hasn’t actually said “you are autistic” though, so I am confused. What does all this mean?
We are there for two and a half hours, talking about how my life looks, how it has been impacted and what life was like for me as a child and into adulthood. My brain is exhausted from all the talking.
She talks about how, throughout my life, I learned strategies to mask my struggles, without even realising I was doing it. Masking is hiding, or adapting to how autistics think people think they should be in order to fit in. I have done that my whole life and not always unconsciously. It results in not knowing who you really are. It is exhausting and terribly debilitating.
We talk about how difficult socialising is to me. How, when I gave up drinking 10 years ago, my life got worse not better and how that is because without the numbing of the brain, the reality of my social difficulties came into stark vision. Try as I might I could not overcome them. I simply have no idea how to engage people, or maintain friendships, despite a higher than average ability to articulate.
“And so, Sarah, I can tell you that your results show me that your level of deficits is severe, that you are definitely autistic. How you have managed this far is frankly incredible. Your report will show your diagnosis to be Autistic Spectrum Disorder, level 2”
“There are three levels according the DSM V manual. They determine the level of support you need. One means you need some support, Two means you need substantial support and Three means you need the most support. You are at a two.”
She tells me that it may seem like I don’t need this, but I have been coping and masking for so long that I have not realised how this has affected me. He squeezes my sweaty hand and nods. I honestly had no idea.
I feel hugely relieved. I feel validated, no longer crazy. I feel a sliver of hope creep in.
“You will receive your report in a week in the post. Contact NDIS Sarah, for some help. You deserve it. And it is really important Sarah that you are where you are now, with all your struggles, because you have a neurological difference. It is NOT your fault. ” She looks at my husband. “You need to repeat that to her often.”
The thirty minute journey home is mostly in silence. I can’t find words. He asks me how I am feeling? He answers himself by saying it must feel so good to have answers. I can’t really reply. I have no idea how I feel – a classic autistic trait, to not truly know how you feel. I am tired and want to close my eyes. My brain is smashed.
The rest of the afternoon is spent on the sofa in front of the TV. I cannot string two thoughts together. I am autistic. I am autistic. I play the statement over and over in my head. I message my friend. It feels good to know she has some idea of what I am feeling. I admit to being in disbelief. I message my daughter. She isn’t surprised. I message my siblings. They are glad I am getting answers (I try not to read too much into that). I message my closest friend and she says “u-huh”. Everyone seems to have known but me. Is it that obvious, I ask myself over and over again.
The next day I wake up feeling much better. I feel I have something to work with now. It helps to know why I am how I am. It also explains so many behaviours that I have truly berated myself for over the years. It paves a way to forgive myself for decisions I deeply regret. A weight begins to lift.
I read a lot of studies on women over 50 being diagnosed with autism. More pennies begin to drop.
Then, a thought.
I run through to him, working from home during this Covid-19 crisis. “I’ve just realised that I was diagnosed on May the 4th!”
We smile, then laugh.
Nothing could be more appropriate. In 1977, I was 9 years old. By the time I was 15, I had seen that movie 25 times, not to mention its sequels too. Back then, as now, I longed to live an accepted life “off-world” and loved to watch Lea, Luke and Hans doing their thing imagining myself right there along with them.
“So, you’re autistic: May the 4th be with you,” he says, and how we laugh and laugh.