Rising up after your midlife autism diagnosis

"Congratulations!" 🥳 And what else you need to hear when newly diagnosed autistic

Receiving an autism diagnosis as an adult is an opportunity to:

• reframe your past self

• regulate your present self

• reimagine your future self

• create a neuro-affirming lifestyle

• understand and process relational and intergenerational trauma

As a child of 1980s London, my female autism was always mistaken for shyness. I never had many friends, and I was a late developer of speech. A credit to my masking skills, I was seemingly unremarkable from the outside, yet my inner world was full of rich language, vivid imagery and endless possibilities.

My inner world was my sanctuary.

Is it any wonder then that I always wanted to be alone in my thoughts, when being amongst peers was an exhausting daily struggle?

Over the decades, my autism continued to be missed. My meltdowns were mistaken for my being overly dramatic; my shutdowns for moodiness.

Frequently, late diagnosed autistic women regale tales from their previous years of being misunderstood, rejected, shamed, vilified and abandoned.

Is it any wonder then that we mask our natural tendencies, when we are repeatedly rejected just for being ourselves?

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I was the first person in my family to receive a formal autism diagnosis. It happened when we had first moved to New Zealand - 6 years ago, when I was aged 37. My young sons’ diagnoses followed shortly after. Then soon after that came our ADHD diagnoses. The paperwork and emotional work involved during this drawn out process was intensely overwhelming.

Unfortunately there is no definitive post-diagnosis guide book on how to safely unmask, pick ourselves up, and reframe our lives. Survival is our goal at this stage. To “thrive” in autistic midlife feels insurmountable, although popular culture tells us that we should.

We may even regress, when we are expected to be moving onwards and upwards.

Realistic expectations of midlife autistics cannot be the same as those of non-autistics. We deserve to live in line with our own needs, which will change fluctuate from day to day.

We are inundated with Instagram profiles telling us to “how to live your best life”. Not only is this a farcical mass social experiment, surely doomed for collective mental collapse, but it is also wrongly demanding us all to present an identical ideal that may be unhealthy and unsafe for late diagnosed autistic women.

Yes, some people can and do curate their online presence to make it look like they have it all, but this farce is not something autistic women should ever feel pressured to participate in.

We need to reframe our self-expectations in line with our individual needs and capacities.

Photo by Kevin O'Connor on Unsplash

Welcome to Autism! Now you can stop trying to be “normal” and instead take your own authentic, quirky path.

Yay!

A midlife autism diagnosis can bring joy, relief and an eventual explanation for our lifelong struggles and differences.

A major failing of the deficit-based autism diagnosis process is that we are pathologised beyond all recognition as humans.

This clinically psychological fragmentation can leave us feeling fractured and deeply traumatised by our diagnostic character assassination.

Often the assessment requires us listing, detailing and reliving every personal trauma and rejection that we can recall over our lifespan to date.

Upon diagnosis, we begin the laborious process to forgive ourselves for these “character flaws” we have been trying to mask all along. At this point we need to remember that we were never flawed, and we don’t need forgiveness.

Acceptance of our individualism is our future.

The period of self-identification and diagnosis can be a time of great sadness, as we think back to our younger self. She always knew she was different, but could never quite understand why.

With the label comes liberation!

Have you recently discovered you are autistic?

• Congratulations!

• Autism is your normal, and you don’t need to compare yourself to anyone else.

• You are not the problem, a societal lack of tolerance for individuality is the problem.

• Take a strength-based approach to your life, as focusing on your interests is most beneficial to building your self-esteem and boosting your emotional and sensory regulation.

• Managing your anxiety, with appropriate supports, will make your life easier to live.

• Your sensory preferences and intolerances matter, so build your lifestyle around them.

• Find your tribe (hint: we are waiting for you in the chat👇), there is emotional safety in numbers.

Autism is complex, and that is what makes you so amazing!

Things will often feel worse before they feel better. It is okay if you are experiencing grief for the traumas and misunderstandings your younger self endured.

Your diagnosis may have occurred following many wrong mental health diagnoses.

You may have a whole list of co-occuring chronic conditions that you are also managing - or at least trying to manage.

Autistic life is complex and exhausting.

Often a late diagnosis of autism comes alongside the onset of autistic perimenopause. Our hormonal fluctuations can cause regressions in our capacity and functioning. For some cruel reason, this may all be colliding with the rollercoaster of hormones from t(w)eenage children in your household.

As if that’s not enough, whilst you are already on your knees from living in intergenerational hormonal hell, your parents will also be getting older, maybe frailer, whilst your parent-child relationship with them is morphing into something different. You may be dealing with bereavement, taking on a carer role or preparing yourself for these future scenarios.

There is a lot of midlife stress, grief and loss, countered with the relief and overwhelm that a recent autism diagnosis can bring. Transitional life changes are rarely the forte of autistics (even for AuDHDers like myself).

You need time and headspace to process all of this new and challenging information. Your diagnosis is positive as it provides a welcome reframe of your entire life up until this point. But it is also exhausting, as you grieve for the life you could have had, if only this diagnosis had occurred sooner.

Your emotional and psychological safety must be your priority right now (well, all the time, but you know what I mean, right?)

All this processing requires deep rest, restorative sleep and extended periods of down regulation. Not easy for any member of the autistic sandwich generation!

Boundaries are essential so that you can get a break from the people, expectations and situations that drain your energy. It’s okay to feel sad about it all, but sometimes during this time we can get lower than we ever have before, and we may not know how to reach out for help and community.

Below are some links to support you, and please reach out any time in the comments or in The Autistic Perimenopause: A Temporary Regression chat threads.

You are not alone.

Welcome to the club! 💕