A Vision for the Next Generation – Females with ASD
So – it’s no longer “new” news that women are underdiagnosed. Researchers are clear that Autism has always been described with males in mind, meaning that women have “fallen through” the diagnostic net, but crucially that the consequences of being missed are massive (The Lost Girls (Apoorva Mandavilli). Each week simply breathtaking articles appear from women talking about their journeys to identifying with Autism telling of the hard roads traveled in a world that has not understood or supported them, telling of the revelation and freedom that identification has brought, and of their wishes for the next generations. It’s clear that the system needs to change somehow. But how should that change look?
This post has been so long in coming because I have been working through in my mind what support for females with Autism needs to include. As a woman with daughters of my own – my heart and mind keep coming to the next generation. How are we going to make things different for them? What does need to change? This started as a list but has ended up as more of a matrix. None of the steps are in isolation and they all feed into each other with females with Autism at the heart.
- Listen. We need increased awareness from professionals and parents awareness of the ways that Autism may look different for females. It’s essential that at an earlier stage parental concerns are listened to, that a dialogue is started and that the right assessment is sought. It’s not enough to wait till a crisis point has been reached – this is about preventing the harm that comes from missed diagnosis/misdiagnosis.
- Identify. We need more refined tools to help us identify autism earlier. Many of our usual assessment tools may well be too blunt to do this job. Some diagnosticians are developing adaptations of standardised tools for females (such as Judith Gould with the DISCO). But for me as a professional (Speech & Language Therapist) it’s all about asking the right questions and really, truly listening to the families and the young people – they hold the key to identification. Yes, our diagnostic procedures need to be robust and thorough but for girls we may need to rethink how that looks. In my clinic it’s about how we see the subtleties in the young girl who aces the picture-based pragmatics assessment in the four walls of the clinic. She may be the model student, a voracious reader and constant questioner at home – she’s learned these things well and knows how to respond. But see her at home when the front door closes, the social mask of coping comes down and the school day’s exclusion sinks in – and it’s a different story.
- Understand. Once Autism is identified there needs to be support to understand themselves and what Autism means for them – what their own personal brain-wiring is like (not just in terms of challenges but importantly in terms of their many awesome characteristics). We need to support families to understand and provide the safe and accepting jumping off point (and retreat point when needed). Understanding (really “getting-it”) is a powerful thing. When we understand that the reason our child spends 30 minutes needing their socks adjusted each morning is because seams are sensory overload – then it helps us to calm our irritation with them and take time to calmly fix them. When we understand that they are not answering when we ask a question because they are too anxious to speak – then we can try and find the time to support and not harangue. It will still be hard, but as parents and supporters ‘understanding’ can help us step back and take a breath.
- Accept. I don’t mean acceptance that limits and say “well you have autism there so there is nothing more we can do” – but acceptance that nurtures and feeds the roots and provides a safe space from which to challenge and grow. Loving acceptance that sees potential and believes. Acceptance creates the safe place from which to venture out into the world – and the space where you can always return and truly be yourself.
- Equip. My vision is to support young women to fill a virtual “toolbox” of knowledge and understanding and skills which they can draw on as and when they want and need to. NOT an enforced framework of “how they should be” but strategies they can pick up to use when they feel the need. But always with that safe space (Acceptance) to go back to where masks and tools can be laid down and they can just be.
- Aspire. We need to 100% aspire for these awesome females – I don’t mean aspiration in material terms – but rather belief in each individual and how that looks for them. It means looking for a brighter future for our girls. It means breaking down the preconceptions and taboos about autistic people and the limitations that are imposed upon them. To aspire is to hope – I travel this journey with the Aspie girls I know hopefully.
- Don’t stop at point 6 – keep going – listen, identify, understand, accept, equip, aspire, equip, understand, accept, accept, accept, listen, accept, equip, aspire, equip, listen – and so it goes…..
This post has been percolating for some time. In the past year and a half I’ve gone back to basics about what I “thought I knew” about Autism and am looking at the world (and my work as a Speech and Language Therapist) in a very different way now. I’ve been totally focused on autism and lots of my reading/ thinking/ discussions etc have been about autism – and particularly relating to females.
So many women have influenced my thinking – Sonia Boue (Autism Snap, Falling Through), Sam Craft of Everyday Aspergers, Jennifer Cooke O’Toole, Sarah Hendrickxs and Alis Rowe, and also the SWAN network in Scotland. They, among many more, are key in helping the world look, listen and understand something that was previously hidden from sight. It’s thanks to them and many others who are lighting the lamp and sharing their stories that the path will become clearer. Thank you all.
Image designed by Jude Philip and digitally created by Mairi Blyth.