Issues that impact on autistic women, 18 June 2024

Issues that impact on autistic women for council and NHS staff supporting them in the community

Watch a recording of the webinar:

Question and answer session

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. 

General resources:

• Autism Central health and wellbeing
• Creating an accessible environment for autistic people
• Neurodiverse Connection on buildings and design
• Neurodiverse Connection on regulation, including videos and practical demonstrations of exercises

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.

Resources on how to help someone with autism to interact more socially:

• National Austistic Society: Making friends: supporting your autistic child
• National Autistic Society: Making friends: a guide for autistic adults

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?"

Recent guidance on therapeutic models:

• NHS England: meeting the needs of autistic adults in mental health services 
• Neurodiverse Connection: therapeutic approaches resources library
• Neurodiverse Connection: resources for women and girls
• View from expert by experience Molly: depending on the aim of therapy (and in my experience this was to treat an eating disorder/ 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 e.g., using the same rooms, consistent times etc.

Resources to support people pre-diagnosis:

• NHS England operational guidance about covers pre diagnosis support
• National Autistic Society guidance on coping with diagnosis
• Derbyshire Autism Service is an example of an organisation that offers support locally
• Suggested resources about diagnosis by Neurodiverse Connection

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'."

Diagnosis/misdiagnosis

Do you think that many women are diagnosed with EUPD are potentially masking autistics who do not realise? I guess what I am to ask or say is that I have many autistic women who also have a diagnosis of EUPD, and I wonder whether they are being misdiagnosed after hearing you speak today about nervous system and the polyvagal theory?"

Research on diagnosis:

• The Lancet: Perceived misdiagnosis of psychiatric conditions in autistic adults
• University College London: Addressing misdiagnosis: towards a better understanding of how to clinically differentiate autism and borderline personality disorder

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

On food and eating

Neurodiverse Connection resources on eating, food and eating disorder

Avoidant restrictive food intake disorder (ARFID)

In relation to ARFID, is it suggested to seek support with this i.e.: visiting GP?"

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

• Peace Pathway information about how to support someone who is autistic who has issues with eating
• An Autistica webinar covering ARFID

Safe foods

There was reference to safe foods. When trying to encourage a variety of foods does this mean then that other foods are unsafe. What language should be used?"

People with ARFID may avoid foods which are unfamiliar (they may be called fear foods, unsafe foods or unfamiliar foods,) and people with anorexia often have ‘fear foods’ which they may avoid due to concerns about impact on weight/shape or negative associations (such as it being deemed as unhealthy by a friend.)

Some people with eating disorders uses the term 'safe food' to mean food options which they feel ‘comfortable’ eating. This may be because they are deemed ‘healthy’ by society or because of their perceived impact on body weight/shape. Each person will have their own safe foods with different reasons as to why.

Depending on whether you are trying to increase variety for and autistic person who does not have an eating disorder, an autistic person with ARFID or anorexia will depend on how you can best support them.

You could use the term “foods that you find more anxiety provoking” or something to that effect. The Oxford team often use the language the young person uses.

When supporting an autistic person, taking a planned, slow and gradual approach to introducing fear foods can be helpful. Trying to force new foods onto someone or introduce a whole new meal is likely to overwhelm them and not have the desired impact of increasing variety.

Resources on food and eating:

• Neurodiverse Connection resources on food and eating 

Regarding aversion to foods, do any statistics show a preference for raw foods overcooked?"

Autistica: Eating, eating disorders and autism

PEACE pathway

In your adaptions that were made. What is the PEACE pathway resources?"

Find out more about Peace Pathway

Hospital at Home

Is the Hospital at Home service 100 percent remote offer? No home visits.

For the Hospital at Home Eating Disorder service the Oxford team is completely virtual. 

There is a Hospital at Home Learning Disability service which does do home visits.

For NHS team - Are any of the sessions family focused? To work with the family dynamics?"

Yes, we do offer family sessions please see the presentation above.  We are able to offer sessions with parent and the young person if this is felt to be helpful. We use a family-based approach,

In the hospital at home service, you said you offer support to parents. Is this a time for them to talk or is this using a psycho education model to impart strategies?"

The parent sessions are a mixture of time to talk and psycho-education dependent on the needs of the parents. Please see the presentation above.

Occupational therapy

In the hospital to home your team does not have an OT. The work you do appears very typical OT aligned. is there a reason you do not have this professional?"

We tried to recruit an Occupational Therapist but could not recruit so we recruited an art therapist instead.

For the Oxford NHS team - do you have autistic professionals within your service guiding the support being given?

Not at the moment however many services do, and this is changing: information about involving autistic people in teams

Co-production

Do you consult with autistic people regarding your service, i.e., people with lived experience to shape your service?"

We very much personalise our service: PCH resources on co-producing with autistic people