I was diagnosed as autistic at the age of 52. I had worked it out well before then! The realization came when my oldest child was diagnosed at age 11. I have a clear memory of being in the car with him as he had the routine post-school meltdown. “I’m a freak,” he cried and yelled. It’s funny. I was so calm. “Am I a freak?” I asked him. “Really, do you think I am?” He was so shocked! I went on. “Because you are just like me. Like my brother, like my mum and my dad. Are we all freaks?” His stunned face, silent, still sits in my mind. We sat in that car for ages. And I explained how normal he was to me. How familiar. How I understood his manner of seeing, thinking, being. That yes, life would present challenges, but I was OK. Wasn’t I?
Well, I’m OK now. But it took 22 years from the time this darling boy was born before I reached my safe harbor, my autism diagnosis. I had a pretty typical diagnostic trajectory for autistic women. Mental health issues in my teens. First diagnosis – anxiety. No, really? I had already worked that out. And I carried on. The came post-natal depression. The moment my boy was born I stopped sleeping. And he didn’t sleep much either — 45 minutes at a time for the first 10 months, punctuated by screaming. I got up every morning and sobbed as my husband left for work. My doctor told me I was “just” tired, because I was “too sensible to have post-natal depression.”
During my second pregnancy, I had ante-natal depression and five months of hyperemesis – I vomited day and night without respite, except being hospitalized to rehydrate. This couldn’t possibly be anxiety-related, according to the doctors; it was “just” morning sickness. My darling daughter was born and things just got worse. The house was perfection. I cleaned obsessively. The children were routined within an inch of their lives. I barely ate. I started throwing up and having the most dreadful moments of… well, horror. I had to call an ambulance a few times, because it wasn’t safe for me to be home. And yet, not once was I told that these were panic attacks.
Then came That Day. I called an ambulance, got to the hospital and demanded a psychiatric assessment. By this stage, the baby was 4 months old, starving because I was emaciated from being unable to eat and all the vomiting and I was very, very scared of harming myself. The emergency team diagnosed post-natal depression within moments. I was so unwell that the baby and I spent seven weeks in a psychiatric mother and baby unit. They saved our lives. I started therapy with a psychiatrist, went on meds, and had ongoing, weekly support groups. And received diagnosis number two – generalized anxiety disorder (GAD).
As my two darling children grew and I saw my psychiatrist weekly, we noticed that I wasn’t recovering as expected. I seemed to not really fit the “usual” pattern. So along came diagnosis number three, bipolar disorder. I started medication and… nothing. No better, no worse, just the endless same not quite right. Anxiety, sensory difficulties, occasional auditory hallucinations and difficulties with communication. I came off the medication.
We had baby number three. I had five months of hyperemesis again, and later the predictable PND, and spent another seven weeks in hospital back on anti-anxiety meds. I was so relieved. Compared to the bipolar medication, they did help me cope. My sensory challenges reduced, and I didn’t get so worked up about getting things right. Having things “just so” stopped being an almighty obsession. Doing cognitive behavioral therapy (CBT) and mindfulness at my weekly support group helped a lot too.
Life went on — a hectic life with three incredibly quirky, sensitive kids who weren’t coping with the world around them. Bright, inquisitive, but socially unusual children. And that’s when the diagnoses started. In birth order, one after the other. Light bulb moments, one after the other, where each child seemed to come into focus – because they had entered my world. I’d often felt like a failure because my children didn’t respond to what the parenting world was telling me to do. But they responded – and thrived – when I used my mother’s methods, and her mother’s. When instead of forcing them to do what they were supposed to, I listened to my instinct and did what they needed. And when I accepted there was a name for what my family of origin had been, and that it fit me too. Autistic.
I had another bout of mental illness at menopause, about five years ago now. Only this time when I had therapy, I had something to contribute that altered how my therapists worked with me. I disclosed my children’s diagnoses, but I didn’t yet claim it for myself. But in my own mind and heart, I had no doubt whatsoever. Instead of fighting the anxiety, I was taught to work with it. To accept that anxiety was an integral part of me and to manage its effects on me, and to learn to live with it. With the right meds, the right therapy, and with my own secret self-knowledge, that last recovery was the most successful.
I have never felt so well in my life, because that’s when I started to treat myself the way I treated my children. I realized that sleep was essential – my downtime. I started to honor routine and habit in my life, rather than fighting them. I became conscious of my sensory challenges. All those things I had taught my children to do, I applied to myself. And life has never been better.
As a treat to myself a couple of years ago, I saved up the money and booked an appointment with a specialist in the female presentation of autism. I received my diagnosis. I do not have bipolar disorder. I do have a mood disorder, which is defined by having had multiple episodes of depression. And I will live with anxiety ’till the end of my days. But that’s because I am autistic.
The obvious question is – does it matter that autism was never suggested, investigated or diagnosed? Yes it does. You see, life has been a little too exciting for me recently. I’m not feeling so good, mentally. One child is doing their last year of school, one has had depression, and the third came out as trans. I recently saw my psychiatrist and told her I am a bit worried about myself. And we discussed my autism. Not depression. Not anxiety. We talked about how I have had too many transitions to manage at once. I need to work through, process and synthesize them into new realities. We looked at my need for downtime to do this, and how to make room for it.
She and I discussed my current sensory disturbances. My body has felt encased in mud and like I am wading through the world, feeling the air thick and damp around me, slowing me down. Separating me from… stuff. And the humming in my ears, which I sense as my mind working overtime, trying to catch up with my new realities. In fact, knowing I am autistic made an enormous difference at my appointment.
I don’t need my meds changed. I don’t need to go to hospital. My doctor confirmed it. I need time and space. To respect the messages from my body and mind. To let my autistic brain do its work and find a safe way for me to be. This is knowledge equaling power. Power I never had when my autism lay hidden, its effects unknown and uncared for. Because my doctor recognizes that I am autistic, I know I will recover quicker than ever before. Because knowledge is power.
I am autistic. And yes, it does matter.
About the Author
PositivelyPinkÂû is passionate about autism being an intrinsic, valid, other way of being. She and two of her children fall on the autism spectrum, as does millions of other Americans. Her other passions include, but are not limited to: advocating for autistic girls and women, supporting and educating the families of autistic girls and gender diversity along with neurodiversity. Read more of PositivelyPinkÂû’s work here.