Issues that impact on autistic women

We've collated and published some of the questions and answers posed during our recent webinar 'Issues that impact on autistic women' with consultants from Neurodiverse Connection and clinical nurse lead and modern matron from Oxford Health NHS Foundation Trust . You can view the webinar recording, read the full Q&A and access links to resources on our Past Presentations page.

Managing dysregulation

For women living in overcrowded homes with nowhere to go to manage the dysregulation (an inability to control or regulate emotional responses) or not have the opportunity to work towards the window of regulation. How could they be supported?

It is important for professionals to personalise their approach and work with someone to develop solutions that work for their circumstances. Noise cancelling headphones for example can help some people but not others.

Interacting more socially

How can you get someone with autism to interact more socially?

Autistic people have differences in communication and social processing. It is important we recognise that these are not deficits, but differences.

Each autistic person will have their own, unique social challenges. It is important to work with them in order to identify their goals in relation to social interaction and any barriers which may prevent them from achieving these (for example, high levels of anxiety when meeting new people.)

Taking a strengths-based approach, utilising abilities and interests, can be helpful. Depending on the age of the autistic person, modelling positive social interactions, using visual planning aids or social narratives/stories can help to provide predictability.

Good therapeutic models

As a clinical psychologist, I often come across autistic girls (diagnosed and not formally diagnosed), in general what are your experience of a good therapeutic model to use with an autistic individual?

View from expert by experience Molly: depending on the aim of therapy (and in my experience this was to treat an eating disorder or mental health struggle,) rigid models such as CBT/DBT can be challenging. The abstract nature of them, combined with alexithymia and communication difficulties, made it hard for me to engage in and implement strategies in my day-to-day life.

Taking a more person-centred, neurodivergent affirming approach in which different skills and strategies are used but allowing for relationship building and open discussion have been more helpful.

Supporting women pre-diagnosis

Is there anything that can be put in place for those women who are still waiting to be diagnosed? Just asking as the waiting list times are so long so often these women cannot access support before diagnosis.

Taking a neurodivergent affirming approach whilst waiting for an assessment as well as making adaptations to treatment based on individual needs. The Oxford team would encourage making reasonable adjustments for all patients that require this regardless of diagnosis, for example, using the same rooms, consistent times and so on.

Whether to seek diagnosis as an adult

Is seeking adult diagnosis important if the person has recognised autistic traits because what changes when a diagnosis is officially made?

Seeking a diagnosis is a personal choice but it can allow adults to make sense of themselves and their experiences. Other people’s responses might alter for the better once the diagnosis shared. It can enable the adult to access the literature and support groups and develop an understanding of autism and their strengths and difficulties. It is important however that services are needs led and not diagnosis led so that women are not told they cannot access a service because they do not have a diagnosis if they have a need.

View from expert by experience Molly: For me personally, being diagnosed as autistic has helped me to accept and process this rather than simply 'wondering' and being harsh on myself for the challenges that being autistic brings. Whilst there is not much formal post-diagnosis support, it can be really helpful in getting informal support from family and friends, and accessing things such as access cards, disabled/blue badges and PIP. Had I not got my diagnosis, I do not think I would have been able to accept myself and the challenges I face and would have forever been trying to force myself to 'change'."

Emotionally unstable personality disorder (EUPD)

How have you both had a diagnosis removed from your records? As clinicians do not appreciate making a misdiagnosis. Often if someone has EUPD then diagnosed with autism, it is recorded they have both diagnoses.

EUPD can also be known as borderline personality disorder (BPD) or emotional intensity disorder (EID). Some people do not like those names.

There are also many overlaps between EUPD symptoms and autistic experiences.

Rethink Mental Illness acknowledges that all three names can be controversial in their description of this diagnosis

Rethink on how to access your health record and to ask for a record to be changed

Avoidant restrictive food intake disorder (ARFID)

In relation to ARFID, is it suggested to seek support with this, such as visiting GP?"

If ARFID is causing the person a problem and in particular leading to their diet not meeting their nutritional needs, yes.