Non-pathologising therapy group

Jan Hawkins and Julie Elliot in the non-pathologising therapy group offer their first blog post below. Jan writes:

I am delighted to have been joined in this group  (two of us now) by Jules Elliot, whose article will be in the next PCQ.   We both hope others will join us in this group to explore our unique person-centred embodiments and our thoughts about ensuring that pathologising our clients does not seep into our practice. Jules and I met again and are hoping to offer a monthly blog, which we will each write and edit for the other, or sometimes write together. I’m starting off with some thoughts about the Autistic Spectrum. These are thoughts for exploration, not for prescription!

I work with a considerable number of clients who arrive with diagnoses of autism, high functioning autism, severe autism or Asperger’s Syndrome.  My first introduction to the world of autism was over 40 years ago when I worked as a teaching assistant in a special school, in a department where all our adolescent students had diagnoses of either severe autism or psychosis. The latter I now suspect were young people who had higher functioning autism, but that was not understood then. The first thing I learned, which is important to this day, is that each person who has any form of autism is unique. Unlike in the neurotypical population where there are shared norms and understandings, and an ability (mostly) to think flexibly and adjust to new situations, each individual within the autistic spectrum has their own unique, and often inflexible, way of thinking which sets them apart from their neurotypical peers, and often too from their peers who live with the complexities of neurodiversity.

What is most important to me is that I respect whatever my client brings, and that includes their own diagnoses. I want to understand what a diagnosis means to that person, and I notice that my clients who have a diagnosis of autism, high functioning autism, Asperger’s Syndrome, or Autistic Spectrum Disorder (the last one grates on me as I feel strongly there is no need to add the word disorder) have a variety of feelings about the diagnosis. Some struggle with having been given a label at all, and desperately want to ‘be normal’. For the clients I have worked with and the young people I have known in other contexts, this desire to ‘be normal’ is terribly painful, as they can so often feel marginalised, struggle with social anxiety, experience bullying, and feel in turmoil about accepting a diagnosis they understand means a lifelong way of thinking and being (or ‘lifelong condition’ in diagnostic terms)that makes it tougher for them to cope with a world they see others apparently unaffected by. For these individuals, after establishing a secure therapeutic alliance and  extensive exploration of these feelings, I find myself sharing my experience that, though the diagnosis does mean a lifelong difference, they can be so much more than the label.  Others, however, embrace their diagnosis and it is very important that it be acknowledged and a least a modicum of understanding from their therapist to even begin exploring what they need to. It behoves those of us in the neurotypical world to use any flexibility we have, to walk closely beside our clients, whatever their unique difficulties are. 

So, in this very brief look at the autistic spectrum, I encourage therapists to learn about the specific difficulties facing so many who think very differently and struggle with extreme social anxiety and difficulty in making psychological contact.  I am in awe of so many of the clients I have worked with over the years, who will always have autism, but who have developed ways of being through the relationship we have, which they take to other relationships.  I do have to adapt my way of communicating to match my clients no matter what their difficulties, but knowing the experiences of so many people for so many years, I notice that the expression of feeling ‘got’ for the first time is quite common among those who have a diagnosis on the autistic spectrum. Many describe relief that they can be understood at all.

My feeling is that I have no right to label or pathologise, but neither do I have a right to non label or ignore a diagnosis which an individual has accepted as part of their identity. For this reason, I am especially shocked at the DSM 5 changes to the description of autism.  Not being a fan of DSM anyway but feeling obliged to learn and understand what clients come with - whoever was set the task of updating DSM 5 for autism shows a remarkable lack of understanding of autism!  Firstly, people on the autistic spectrum often struggle with change – so to change the descriptors from something which was actually understandable (if offensive in its language) to something which creates more pathologising seems simply to be an arbitrary  change to seem like a relevant update. Most offensive is the decision taken in DSM 5 to do away with the terms autism, high functioning autism and Asperger’s Syndrome to instead refer to all who had those diagnoses as having instead ‘Autistic Spectrum Disorder’ or ASD for short! I feel utter outrage on behalf of my clients who have a diagnosis, have understood their own experience of it and are working extraordinarily hard to manage their lives in  neurotypical world, and now they are to be referred to with a different description which includes the word ‘disorder’. That’s where understanding diverts from pathologising. Among medical professionals as well as the public there has always been misunderstanding of the terms high functioning autism and Asperger’s Syndrome. Essentially the diagnosis depends not on the difficulties the individual presents with, but where the assessment takes place. Often a diagnosis of Asperger’s Syndrome is taken to mean a mild form of autism – it is not for the individual who lives with it. Also, some of my clients, and my own son, who were told they have autism or are autistic, have used that descriptor as part of their identity, and can be very upset and confused if someone refers to them with the other descriptor.

In essence, in this very brief blog, I want to share the idea that to be anti diagnosis can be as disrespectful as being someone who labels.  Furthermore, to learn more about a particular difficulty, way of being, syndrome of personality traits or diagnostic label, is not an invitation to pathologise. It can be a stretching of our ability to understand and come alongside our clients in a non pathologising way, but one which honours each person’s differences from an informed perspective. This can allow a client to feel psychologically connected and accepted, as whatever they bring as part of their identity is taken seriously, not dismissed as just a label.

At this point in my first blog on this subject, I invited Jules Elliott to read and comment – we have agreed we will share our thoughts in this way. However, her response was so clear and added so much that I felt it would be more useful to include it here in her own words:

Jules: I loved reading this. I wouldn't change a thing! Not sure if it's of interest to you, but here were my immediate responses/ questions....

I had not considered the impact that changing the names of autism could have. 

 Is autism a lifelong 'condition' that a person 'has' or an alternative way of processing? I guess only the individual can answer what this means to them. 

I am aware that for many, the process of obtaining the diagnosis can involve paediatricians, psychiatrists and psychologists, so the journey of diagnosis takes clients and families deeply into the realms of medicalisation (Obviously!!) and thus can become a measurement of malfunction or deficit and a measure of how much people deviate from the norm.  However, what I love about your article, is that it respects that every client owns their own 'norm'  thus avoiding the disempowering impact that labelling can sometimes have. 

In meeting the client where they are at, your perspective reminds me that all clients need to find their own meaning, it neither ignores diagnosis, nor does it look at the client through the lens of the diagnosis. But the focus is on the unique meaning making of the client from their experience of life and society. From this, we can appreciate the client's frame of reference, for example, ensuring that if they describe distress and anxiety it is not just written off as  a 'typical' aspect of autism. 

What your article means to me (Mother of  son with ASD diagnosis) is that when we respect a person's  uniqueness, it takes away the pressure of feeling obligated  to work hard to meet the norms and expectations imposed by society to 'fit in' which can be exhausting. Meeting people where they are, and recognising their unique challenges, and strengths and potentialities,  alleviates the pressure on those who experience heightened conditions of worth and allow them to be open to receiving unconditional positive regard for being their true self, which for me, is just as it should be. 

 Jan: on Jules’ point about the medicalisation and stress of even having an assessment for  neurodiversity or specifically for late diagnosis of autistic spectrum complexities, I encourage anyone who seeks my support in this, to hold out for full assessment with the National Autistic Society’s Lorna Wing Centre. This because when my oldest son needed an assessment, his complex medical needs meant I refused to have him assessed in a hospital setting. It took three years to fight for the funding to get him to the Lorna Wing Centre in Bromley, an ordinary house in an ordinary street where the whole assessment is done in one day. Where the consultants ensure they have a grasp of the individual who is being assessed in terms of their particular needs, fears, anxieties and so on, before meeting them, so they can create the environment and their approach to be as respectful and least anxiety provoking as possible. It truly was a compassionate and person-centred experience, despite involving a full day of testing for my son (with breaks guided by him) and for those of us who know him. After a break during which the consultants shared their findings, we met round the kitchen table in the centre, and they directed their diagnosis to my son in the language I had told them I had used to help him understand why we were meeting these people. I would not allow him to have numerous appointments in hospitals with different people each time and eventually a report through the GP with the outcome. I am sure there are some wonderful assessment potentials through NHS, but I hear of too many where the individual and family can feel pathologised just because of the process. My research and experience professionally told me it was better to fight on for the funding (Lorna Wing Centre did not then take private referrals so it had to be NHS funding), even though it took so long, than put my son through yet more hospital experiences – he has enough of those for his medical conditions. The result is that he has a way of explaining to people why he doesn’t understand, or why he is panicking over what they see as perfectly acceptable sudden changes to routine.

I had learned that there is a way of identifying the specific difficulties faced by individuals who may be on the autistic spectrum, which can be compassionate, person-centred and can support the individual in understanding their own way of being in a valued, non pathologising way.  

So, here is our first blog from the non-pathologising working group of TPCA. We would welcome any interested parties to join us. Please email npt.group@the-pca.org.uk