Why Stigmatising Autism Costs Lives

And why getting a diagnosis can take so long: from shy introverts, to highly sensitive people to eventually discovering our neurodivergence

Content warning: I will be busting social taboos around autism, menopause and suicidality.

Photo by Dan Freeman on Unsplash

Women I know, love and admire are struggling. One friend confessed to me lately to crying five times in one day for no particular reason. A few weeks ago another friend told me that she had experienced the intrusive thought of taking hers and her children’s lives by driving off a clifftop road, saying that her children would not cope without her, and she could no longer cope. I too have experienced such thoughts, “If I just drive fast enough into a concrete wall, all this will be over”. “If I just park my car on the train tracks and wait.” These intrusive thoughts are common for autistic people at any stage of life. Mostly we can mask and manage them, yet they can torture us.

I have no reason to believe at this point that these suicidal thoughts will progress - regress? - into suicidal attempts. None of us are feeling particularly depressed, but we are all incredibly dysregulated. We are all midlife women, and mothers of autistic children. We all self-identify as neurodivergent.

We are regressing.

We are spiralling.

We need support.

Urgently.

Photo by Lāsma Artmane on Unsplash

There are some excellent resources available for mainstream perimenopause, with the Meno- D being an invaluable self-report scale in identifying menopausal depression. Categories are low energy, paranoid thinking, irritability, self-esteem, isolation, anxiety, somatic symptoms, sleep disturbance, weight, sexual interest, memory and concentration. Many of the categories are lifelong issues I have experienced as part of my own autistic presentation, most of which have worsened exponentially in midlife. It would be fascinating to research the average scores of autistic versus non-autistic women using this scale or one similar during menopause.

The following is a screenshot of the link shared above, pertaining to the category of self-esteem (self-worth and suicidal thoughts):

The Meno- D can be completed as a self-report scale or completed by a clinician. The general reference point for each item is the individual’s pre-menopausal level or state.

My friends previously mentioned and I have all come later in life to the realisation that we are autistic, and we have had to extensively research this and covertly self-diagnose. Throughout our lives, we have looked for other explanations for our traits: from shy introverts, to highly sensitive people to eventually discovering our true neurodivergence. Nobody really assumes they are autistic at first guess. It is still too stigmatised a diagnosis for anyone to claim without spending time processing, researching, tentatively feeling into the edges and seeing how it fits.

Of the three of us, I am the only one who has been through the formal autism diagnosis process. I should have already foreseen that I could spiral through perimenopause, but that knowledge had not been shared with me. Had I known, supports could have been put in place far in advance of my spiralling regression in capacity.

Yet there is no support forthcoming for any of us. We cannot access public adult mental health teams, we are unable to access our respite funding to self-regulate, and we cannot afford to pay the cost of a private psychiatrist. It is very hard to find a knowledgeable doctor who is confident enough to specialise and treat people through autistic menopause. We don’t need to experts though. Like us, they just need to be supportive and curious.

We seek support in each other, to feel seen, valued and validated. Not all midlife autistic women have friends or networks to confide in though, and isolation is dangerous in these circumstances.

We are not necessarily seeking support because we ourselves want to be helped either, or truly feel that we deserve to receive help. Society has primed us to be the helpers. We give and give, and have been socialised never to take. No. We look for help because of the negative effects our autistic perimenopausal moods and actions have on those around us. All through our lives, as autistic women we are told directly and indirectly that we are unpalatable. This may worsen in perimenopause, confirming our worst and most shameful suspicions we hold of ourselves.

The Rage. The joint pain. The lethargy. It is all too much. We don’t want our children to see us like this and to think it’s okay, because it isn’t okay. But at the same time, it must be okay, because this is a common trajectory for autistic people transitioning through menopause. Unless we know about it, talk about it, teach our children about it, we don’t know to expect it.

We have to normalise it.

It catches up by surprise. It shocks us. It shames us. It frightens us. And there will be days when we are so low, suffering with chronic pain, chronic insomnia, heavy painful bleeding. Days when we are so low, so dysregulated, so done, that suicide feels like the only right choice to make. But this regression is temporary. We have to hold on.

We spiral, and we care for our children. We spiral, and we attempt to maintain routine and hygiene for our families. We spiral, and we get into our cars and, despite having passed our driving tests decades before, we forget how to drive. We zone out or we are exhausted or we are so done that we don’t feel we have the capacity to hold it all together any more. And it can all be over so soon.

Photo by Maxime Lebrun on Unsplash

Autistic women are at three times greater risk of suicide than non-autistic women.

We need community but we lack social networks.

We need medical and mental health professionals to know how autism presents in women, to diagnose them and support them appropriately.

We need alternate communication styles and autism friendly resources and low sensory clinical environments to be widespread.

We need to have open shared dialogue in virtual platforms and in real life, where menopausal autistics feel safe, seen, valued and validated.

We need more doctors, nurses and therapists who are skilful at identifying and treating autistic menopausal symptoms in line with the patient’s preferences and other health conditions. And we need them to train and educate their colleagues, trainees and mentees.

Photo by Natalya Letunova on Unsplash

We deserve to live. We are needed and loved. We all need to talk about this.

We can spiral, and later regain control.

We can spiral, and empathise with each other.

We can spiral, and survive.

And maybe in the future, we can thrive.

We have to hold on.