"Adult autism team"

My daughter was first diagnosed with Pathological Demand Avoidance Syndrome (PDA) which is part of the Autism spectrum in 1997. In recent years she was reassessed and we have had ongoing help and support, especially over the last couple of years, from Anne Marie, the Clinical Lead at NHSGGC Adult Autism Team.

I was extremely impressed with Anne Marie’s unparalleled knowledge and expertise of Autism gained through years of experience. In addition to being well up to date with current research and developments including the latest diagnostic assessment tools for ASD. In particular her knowledge of how females present with Autism; often ‘masking’ and spending years without a formal diagnosis, was something I found to be critically important as often an ASD diagnosis can be missed in females or the patient can be misdiagnosed with another condition leading to spending years in the system but more importantly resulting in many more years of suffering without being able to access the right treatment, care and support.

It was very apparent from first meeting Anne Marie that this was a clinician who adopted a very different approach and style to working with patients than a lot of mental health professionals I have encountered. She was very quick to put me at ease, and reassure me that she very much viewed me as being the ‘expert’ on my daughter. She was willing to work with both of us in a very inclusive, collaborative and accommodating way to identify ways to facilitate and make the assessment process more manageable. This has continued over time and whenever my daughter or myself have contacted Anne Marie she is more than willing to help and offer any assistance she can and in a way that works for both my daughter and myself.

Following an extremely fraught and difficult initial interview Anne Marie was quick to recognise how stressful the very ordinary ‘demand/expectation’ of having to get to an appointment on time in an unfamiliar environment was and how it triggered some of my daughter’s sensory issues had been. As a result subsequent appointments were conducted in a much more calm, familiar, stress free and relaxing environment either at my home or my daughter’s flat.

Often mental health services can be prescriptive and the patient is left with little or no choice but to fit in with what works best for the service but does not necessarily suit the needs and requirements of the individual. This would definitely never have worked for my daughter and it was such a welcome surprise to come across a clinician who adopted a very person centred, flexible and accommodating approach and who actively encouraged my daughter to say what would work for her and who then adopted and implemented her suggestions and ideas.

As the saying goes…..’when you have met one person with Autism- you have met ONE person with Autism. These amazingly gifted individuals are exactly that INDIVIDUAL! Anne Marie more than recognised that and it was refreshing to meet someone who did not hide behind the ‘professional cloak’ of ‘I know best and can’t possibly be wrong!'. Anne Marie actively sought both our views and if she had misinterpreted or misrepresented anything that was said, she wasn’t afraid to be honest and admit she’d ‘got it wrong’ and very quickly saw this as a learning opportunity to enhance her knowledge and understanding of how best to work with and support my daughter.

Anne Marie took the time to really get to know and understand my daughter to help build a trusting relationship whereby my daughter felt safe enough to engage without viewing the questions as ‘demands’ and triggering her anxiety to extreme levels which previously resulted in other clinicians becoming frustrated, annoyed or simply unable to conduct a full assessment. Anne Marie helped my daughter to engage in how she interacted, related and communicated with her in such an understanding, empathetic, caring and compassionate way. She never viewed any inappropriate behaviours, outbursts or meltdowns other than being my daughter’s way of her showing her significant distress when her levels of anxiety became just too much and too overwhelming. Actually,Anne Marie’s experience and intuition often managed to pre-empt these situations or when they did occur her calm, positive and reassuring interventions de-escalated these situations relatively quickly by utilising low arousal, minimizing demands, short sentences and not too many questions at once.

This helped Anne Marie to see beyond the ‘mask’ and the array of strategies and coping skills my daughter has LEARNED to enable her to function and to get through anxiety inducing situations. Until afterwards when it takes its toll and the huge distress and impact is released and often through negative or damaging ways to herself. Anne Marie more than recognised this and how my daughter faces huge, huge challenges to get through each and every day of her life.

From my own perspective I have found Anne Marie truly values and actively listens to not only my views on my daughter but she is also more than willing to be ‘there for me’; to offer reassurance, support, or simply a few kind words when things become too much and I just need someone to off load too.

Overall, based on my interactions over a number of years I have had an extremely positive experience with the Adult Autism Team and I think in Anne Marie they have an inspiring clinical lead who goes above and beyond her job role and through example sets very high standards for all the staff working within the team.

I think we have been so very, very fortunate to have Anne Marie to help us both and I would like to say a very heartfelt thank you to Anne Marie for all she has done over the years to help and support my daughter and myself.