3 more things I’ve learnt about Autism…

Advanced Occupational Therapist, Katherine Russell, reflects on her 6 months working within a Neurodevelopmental Assessment Clinic

In September 2021, after working as an Occupational Therapist in an Inpatient CAMHS unit for over 6 years I decided to take a 6-month secondment post with my trust’s Neurodevelopmental Assessment Clinic. The temporary post was created to help reduce the waiting list for young people awaiting Autism assessments which had intensified due to the global pandemic. My role has been to mainly carry out the Autism Diagnostic Observation Schedule -2 (ADOS) assessments and be part of the team’s diagnostic meetings alongside training staff in the role of Occupational Therapy and Sensory Processing and thinking about how Occupational Therapy could be used in a more permanent role moving forward.

I went in feeling confident in my knowledge of Autism having worked with many Autistic young people in my career, however the assessment process was not an area I was very familiar with. I received training and started my position in the team ready to learn and experience a different side to clinical practice than the one I was used to working in.

The experience has taught me so much and has helped me develop and grow as an Occupational Therapist. I now have a much deeper understanding of the complexities of Autism and have seen firsthand the difficulties which individuals and their families go through in the current climate to get a diagnosis and seek the right support for themselves or their children.

3 things I’ve learnt…

• Masking. I have a deeper understanding and appreciation of how some Autistic individuals use masking or compensatory strategies as a coping strategy or learnt response to social situations. This was something I was aware of previously however, I didn’t fully grasp how entrenched these strategies can be and how uncomfortable and exhausting it can be for the individuals. I have lost count of how many young people, mainly teenage girls, I have assessed and spoken to who talk about feeling “lonely” and “exhausted” having to spend all day pretending to be someone different so that they “fit in”. It’s also made me think about how, on an inpatient ward in particular, a young person may be spending most of their day and evenings “masking” inevitably impacting on their ability to engage fully in their mental health recovery.
  
• Downtime. Self-care and having “downtime” have certainly been a buzz words over the past couple of years and the importance of having time to relax, regulate our emotions and senses after a busy day and have time to recharge and rest is very important. What I have noticed in this role is that a large percentage of the young people I have worked with are not sure how to do this. Many times, I have heard young people say they “sit in their bedrooms” knowing they have been told to have “downtime” but unsure what this looks and feel like to them. I believe there is an important role to be had as an Occupational Therapist in particular, in helping individuals learn about downtime and its importance but also what best works for them as an individual and what specific strategies and practices will be more beneficial to them in helping them to regulate, rest and recharge.
  
• Support post-diagnosis. I have been struck by the lack of support and intervention which is available to the young people post-diagnosis. To caveat – this is not down to the standard of care or desire from the assessment team or community CAMHS teams who are unfortunately stretched to capacity at present. The team I have been working in for example are not commissioned to provide specific support for individuals and so cases are referred to their community CAMHS teams. I believe, in the future, a Neurodevelopmental team equipped and funded to provide both assessment and intervention post-diagnosis is not just vital but would likely reduce both the detrimental mental health impacts on Autistic individuals and help support engagement in a meaningful and successful life.

What I’m planning to do in the future

• Training and awareness. I am keen to bring my learning back to both my inpatient team and the Occupational Therapy team I lead and work to increase their opportunities for learning and development in this area and also in sensory integration education.
  
• Advocating for more support post-diagnosis. I will continue to support the assessment senior management team in advocating for more funding and opportunities for post-diagnosis support for individuals. I’ll provide support and evidence for the role of Occupational Therapy in this service.
  
• Take time to notice the seemingly little but big environmental changes. I am keen to make sure I take notice of the things which may seem little to me as a neurotypical individual, such as increased building work on the ward I work on currently, and really think about the impact this will be having on our Autistic young people and how I can best support them.

3 questions which I think are helpful to ask ourselves:

• Whose schedule as a clinician are you working to? Do your intervention goals and session times work to your working hours and convenience more than your clients?
• How can you take more time to reflect, learn and listen to the Autistic individuals around you? Is there further training or development you can do to provide a higher standard of clinical care?
• What can you and your service do to help support people?
  Not just in the reduction of waiting lists, but perhaps more importantly, support individuals and their families or carers post-diagnosis.

If you'd like to discuss this further, Katherine can be reached at Katherine.russell1@nhs.net