Autistic Parents as Autistic Carers

Co-regulating through UK Carers Week 2024 💕💕

Parenting opened an unanticipated chasm within me, into which I quickly descended. It realigned my values whilst my capacity reduced immensely. Yet I had so much more to cope with than ever. Long before I had any inkling that my children and I are all autistic ADHDers, I was unable to fathom my exhaustion, my rapid losing of friends, my high anxiety and constant intrusive thoughts. This was before my perimenopause began, but I have always been hypersensitive. Resistant to the overstimulating outer environment, and shielding myself within my rich inner world.

“You have to go back to work, you need a job”, a friend told me when my eldest son was turning one. I had handed in my resignation after maternity leave and would not be returning to my nursery teaching job. “I have a job! Toddlers are busy”, I replied defensively, on the verge of tears. Always on the verge of tears, or else in full flowing torrents. “But you don’t get paid!” she insisted. That was twelve years ago, and I am now the mother of two boys. The exhaustion has not yet subsided; I am not sure it ever will. I co-sleep with my nine year old who requires co-regulation around the clock, and quality neurodivergent sleep is hard to come by. I remain defensive of my parenting choices, but our collective neurodivergent diagnoses is validating to a certain extent.

Being a late diagnosed autistic adult with full time caring duties for both my autistic children is a challenge. Emotionally, there is so very much to process. Sensorally, there is a constant unending barrage of offences to my fragile nervous system. The mood at home is very often fraught. Society tells me I should be in full time employment, coping, getting on with my household management, social calendar chock full of richly diverse opportunities to create happy Insta-able memories. But that would just make me feel more unstable.

“I just want you to be happy. I am feeling so happy, I want that for you. You need to get out of your own head. Put all this autism stuff behind you now and move on”, a relative advised me recently. Words. So many expectations. Demands on how I should be moving through the world, how I should be feeling, fast tracking my trauma recovery and adapting to the world in front of me. This world. This country, Aotearoa New Zealand, where my disability supports have been restricted beyond recognition. Leaving me and my community, my neurokin, the entire disabled population emotionally fraught, dysregulated, unsupported, institutionally gaslit.

Carers’ needs ignored and belittled. Disabled parents of disabled children unable to access overnight respite in a known safe environment. Advised by politicians to entrust our vulnerable children with strangers, in residential respite care so we can sleep alone in our own homes whilst who knows who takes care of our children? Not a chance. So I continue - co-sleeping, co-regulating, still deep within the emotional chasm that was opened in pregnancy. When my hormones fluctuated wildly to sustain the growing life within me. Driving my raging emotions and depleting my energy. Dysregulated.

Here I am now, an autistic parent carer, perimenopausal. My hormones fluctuating wildly as my fertility decreases rapidly yet agonisingly slowly. Driving my raging emotions and depleting my energy. Dysregulated.

Yet onwards I go. Through medical appointments for the children, for myself, to manage our symptoms of autism and our many co-occuring conditions. Through the brain fog, I somehow remember who needs which medications and when. I drive to and from therapy sessions and hospital appointments, ensuring both boys will have separate access to electronic devices that are fully charged and paired with noise cancelling headphones. I pack snacks, water bottles, books that will go unread but are needed just in case I can’t get onto the hospital wifi. I pack the snacks and water bottles separately from the devices and the headphones because I don’t have a paid job and so we can’t afford replacements if they are dropped or water damaged. I am told I overpack and carry too many items. Too many bags. Always overpacking, over sensitive, over thinking. Too many bags, too much baggage and just too much.

Parking at the appointments, I have to ask the boys to help me remember where I leave the car because my brain fog overwhelms me. I am perimenopausal, I tell myself. I am not going mad. Tomorrow we will stay at home. No demands. I hope I have enough petrol to get us home because if I have to stop to refill I may well have a meltdown on the forecourt. Enough, there is enough, I tell myself. I am enough. I have had enough.

Every appointment I have had with the boys is another chance to pick at the gaping wound that is the intergenerational trauma of undiagnosed autism, and the systemic denial of our autistic culture and identity. Consciously choosing to break this cycle does not cause an immediate end to it. It may slow down the momentum, apply the brakes, but there is still untold force in action behind it. The masking, camouflaging and repression of authentic self back through our lineage: the mutism, the over sharing, being too much and not being enough. Too loud, too quiet, too sensitive, too insensitive.

The endless exhausting study of others to gauge where and how to pitch our own voices in words. Words. So many expectations. Demands on how I should be moving through the world, how I should be feeling, fast tracking my trauma recovery and adapting to the world in front of me. This world. This country, Aotearoa New Zealand, where my disability supports have been restricted beyond recognition. Leaving me and my community, my neurokin, the entire disabled population emotionally fraught, dysregulated, unsupported, institutionally gaslit.

Society tells me I should be in full time employment, coping, getting on with my household management, social calendar chock full of richly diverse opportunities to create happy memories. How much socialising can I fit around so many appointments, duties, responsibilities, chores? Why do I still have to contort my face into acceptable expressions and find the correct words, energy level, regulate my mood to fit into expectations? I can’t do it. I have neither the energy nor the inclination.

Caring is not the same as having a “job”. There is no holiday pay, no sick leave, no long term career plan. I still feel the pangs of dread in September where my body revisits the return to school hellish anxiety, even though I am no longer in school, no longer in the teaching profession. Even though my children are homeschooled.

In the daily grind of caring, progress goes unnoticed, whilst my own regressions occur. As a collective, we peak and we trough. There is no linearity such as in non-disabled and non-autistic households. Temporary regressions and constant fluctuations are our norm. It would be unfair and unrealistic to expect things to be any other way. Our accommodations are reasonable, flexible and extremely hard won.

I will honour my innate intensity, because my passion for advocacy is my happiness. The torrents of tears stopped once my anxiety was diagnosed and adequately medicated. I shall be openly and authentically autistic so my children can see our culture within my actions. I will pace my floors while I pace my social engagements, rocking and swaying to the music inside my head. I will prioritise staying well stocked in my children’s safe foods and medications. Managing my hormone replacement therapy and advocating for us all is my job. It is unpaid and unseen work, and it is exhausting.

I will continue to reject society’s idea of how I should be moving through my autistic perimenopause. Because that is my chosen job, and I care about being a carer.

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