Autism: Not Child’s Play

World Autism Awareness Day on 2nd April marked the start of a month of activities aiming to develop understanding of autism and Asperger Syndrome. So I have decided to dedicate this month’s blog to talking about the work I do as a Speech and Language Therapist with and for people with autism spectrum conditions.

One of the things that often surprises people is that I work with autistic adults. Autism is something children have isn’t it? Certainly many internet searches and much media coverage could lead to you this conclusion, but strangely enough autistic children grow into autistic adults, and for many people, particularly with Asperger Syndrome, it is not until adulthood that the diagnostic process begins. This doesn’t mean that they have somehow acquired autism, but rather that it is not until adulthood that their differences start to interfere with living a “normal” life. Quirks are no longer considered “a phase he is going through”. Academic promise does not necessarily translate into vocational success. The shy girl who was praised for keeping her room immaculate is now told she has anxiety problems and OCD.  You get the picture.

The autistic adults I meet are accessing mental health services, so on that basis they are usually struggling with their mental wellbeing. Most often this is the result of living either with an undiagnosed autism spectrum condition, or with a poor understanding of the diagnosis they have received earlier in life. As a result, these individuals have not learned why they act, think and communicate in the ways they do, and have failed to develop a positive sense of self. They can feel that they are the only person who experiences these challenges, and have no or few strategies to deal with the confusing and complicated world around them.

As a Speech and Language Therapist I play an important role within our Community Mental Health Teams for not only diagnosing autism spectrum conditions in adults, but also in providing support after that diagnosis and promoting improved mental wellbeing. One of the most exciting developments I am currently involved with is a post-diagnostic group aiming not only to educate but also empower, and to create a supportive social network of people with Asperger Syndrome in a local area. It is early days yet with this pilot project but the feedback from participants so far is good and relationships are beginning to develop. Ultimately, people living with autism spectrum conditions will learn the most from other autistic people because they will always know more about how it really feels and what really works, but if I can play a part in helping people make those connections then I can be proud of doing my job well.

Simply the Best

It’s been a good long while since I last blogged. This has been partially due to being extremely short on time recently, but also because I had slightly lost direction and was unsure what stories I still had to tell. However, it seems that despite my recent silence, interest in my blog has remained with almost 600 “hits” since my last post. This has reminded me why I started this blog…

…there are still very few Speech & Language Therapists working in the field of adult mental health [so] The purpose of mentalhealthslt is to share my experiences not only with other Speech & Language Therapists but with anyone who works in or has an interest in mental health.

So it’s about time I got back to doing just that!

One of the things I regularly do with people is help them to focus on positive situations and work to their strengths rather than dwelling on negatives and difficulties. A friend of mine also writes a blog which is titled “Rachel’s Three Beautiful Things” which does exactly what is says on the tin. Rachel writes about three beautiful things that happened to her that day – an idea I love. So I am going to borrow the concept (which she also borrowed so I don’t think she will mind) for the next wee while to help get this blog back on track.

By highlighting the three best things each week about being a Speech and Language Therapist working in mental health services, and hopefully encouraging other colleagues to do the same, I believe that I can continue with my mission to spread awareness and develop understanding of the unique and valuable role we play.

So here goes. Here are here the 3 best things about this week…

1. The Sweet Sound of Success – About 18 months ago I met a lady called Sarah* who had become mute following a significant psychological trauma. She had not uttered a word for over 10 years and had become completely socially isolated and reliant on her family for even basic tasks. This week marked my final session with a now very talkative Sarah* who is living her life to the full having rediscovered herself and her role as wife, mother and grandmother.

2. Group Fever – There are a significant number of people with Asperger Syndrome who access mental health services. Many have very little understanding of their diagnosis and can find it difficult to participate in mainstream groups run by the community mental health teams. From next week I am running a group along with an Occupational Therapist and a Support Worker specifically to meet the needs of these clients. We had our final planning meeting this week and everyone is so positive, excited and enthusiastic – it’s infectious!!

3. All for One – This week I have been working in partnership with a broad range of people including a University Disability Advisor, staff in the local library, family members, nurses and psychologists to name but a few. These partnerships help me to ensure that my clients get the best possible service from me and from others, and being able to do that is one of the best things about my job.

*Sarah is a pseudonym to protect client confidentiality

The Language of Mental Health

A young man in a ward of a psychiatric hospital is talking to one of the nurses. Suddenly, he starts shouting and then storms off. He says to you “I don’t know what these nurses are talking about. They’re from the same place as me but it’s like they talk a different language. I don’t trust them. They are up to something. It’s like they are talking in some kind of code. What’s going on?”. As you speak to this young man you realise that his sentences don’t always make sense. Some of the words he is using are not even real words. You struggle to understand what he is meaning yet he looks at you are though you are the one with the problem.

What are your first thoughts? Paranoid? Psychotic?

An elderly man in a nursing home is tearful and withdrawn. You try to talk to him but he says to you “I just don’t understand. I’m so confused. I’m sorry. Please leave me alone.” When he does speak to staff the old man is difficult to understand. His speech is mumbled and he doesn’t always make sense so staff struggle to grasp his meaning and the old man just looks away.

What are your first thoughts? Dementia? Depressed?

Why are you drawn to thinking about these labels? How much of your judgement was based on the way they are talking and the things they are saying?

These men have something in common – they are both experiencing dysphasia. Dysphasia is a language disorder that impacts on your ability to understand and use spoken language. It can result from a stroke, a head injury and some people are even born and grow up with forms of dysphasia. What is different about them is our assumptions and expectations based on their age, circumstances, and the way they are reacting to the difficulties caused by their dysphasia.

Our communication ability, the environment we find ourselves in, and our personality all interact to influence our behaviour and within the context of adult mental health services that behaviour is often labelled with reference to a psychiatric diagnosis without due consideration of all the causative factors. Without a good understanding of a person’s language skills we need to be very cautious about interpreting and labelling their behaviour as a mental illness.

What’s in a Name?

I feel that I have been surrounded by conversations about psychiatric diagnosis lately. The recent publication of DSM5 has raised some great concerns on this topic. An article in last month’s Guardian prompted strong reactions from some. And in the context of my own professional practice, I have spent a long time in conversations with colleagues about a complex individual with a raft of possible diagnoses – none of which seem to sit quite comfortably.

I have been aware for some time now that I appear to hold contradictory views on diagnostic labelling.  On one hand, I am passionate about accurate differential diagnosis to ensure each person I see gets the most appropriate intervention.  On the other hand, I have always advocated that the power is in the description rather than the label.  What exactly do this person’s difficulties look like? And how do they impact on his or her daily life?  Further, I take real exception to people referring to individuals by their diagnosis as if it defines them – terms like epileptic or schizophrenic get me really annoyed!

I have met several individuals and families over the years who are desperately seeking a diagnosis because they feel that a label will give them an explanation, a future direction and access to services.  However, I have also worked with individuals who have been inaccurately diagnosed and this label has had a negative impact on their life, often due to the assumptions that people have made about them based on that diagnosis. And I know a significant number of people who would have their needs best met by a certain service but are denied access because of the presence or absence of a diagnostic label.

I have been wondering if one of the reasons this is such a contentious issue is our attempt to treat the mental and physical aspects of a person in the same manner. Being diagnosed with diabetes, for example, will explain the physical symptoms a person is experiencing, however, is this true for mental health problems? Does a diagnosis of depression explain why you feel the way you do, or does it just label what you already know? Is this the same or different from the impact of getting a physical diagnosis? This is something that I will continue to mull over, possibly for years to come. However, it is my firm belief that what people really value is the feeling that the difficulties they are experiencing are understood by someone; that they are being taken seriously, and I am not convinced we always need to label something to be able to do this.