A summary of a talk given by Paul C Siebenthal (@Aspienaut)
Dorset Adult Asperger’s Support (DAAS)
18th Feb 2014
Bournemouth University, Dorset
Summary by Diane Waters (DAAS) Secretary
We were very pleased to welcome Paul Siebenthal, a service user who was previously a psychiatric nurse, and who is currently lead peer specialist at Dorset Mental Health Forum. Paul spoke to us as someone on the spectrum who also has a good insight into mental health and shared his own experiences and opinions. He was diagnosed with Asperger’s twice, once at age 25 and again aged 37. 65% of people on the autistic spectrum have a secondary mental health issue, very much higher than the general population. There are several reasons why this may be the case. The main issues are mood disorders and anxiety and Paul discussed both these, as well as identifying some different conditions which are often misdiagnosed and over represented. Adults with AS, especially if they are undiagnosed may get caught up in the psychiatric system and perhaps mistreated for other conditions such as schizophrenia or bi-polar. Unfortunately some professionals lack insight and misunderstand or have prejudices about autistic spectrum conditions.
Paul spoke about his own situation – how he struggled with depression and anxiety for most of his life. In fact he is surprised to meet anyone on the spectrum who hasn’t experienced these conditions, although there are some. Speaking for himself Paul believes that a sense of isolation when growing up, struggling to make sense of a world everyone else seemed to understand, not being able to make sense of facial expressions and social niceties, contributed to his feelings. There was no reciprocity or exchange of understanding to give reassurance and relieve the isolation. Other people’s kind words can be hard to receive especially if they are looking to the future. But it can be difficult for someone on the spectrum to imagine themselves in the future in a different or better situation. It requires a sort of mental gymnastics which people not on the spectrum can do and find helpful. Schools seem to use this approach but it is a struggle to take on their kind words. Mood disorders can be over diagnosed because AS people don’t give a lot away about themselves;they don’t have expressive communication when other ask if they are OK, so people ask themselves “what’s wrong?”
Paul spoke about Alexithymia, which is the inability to make sense of emotions and feelings, so that others may recognise when someone is sad or angry or happy but the person himself can’t identify the feeling. He finds that because he seems unresponsive or monosyllabic sometimes, concentrating just on what is going on in his own head, people think there is something wrong and so treat him differently. This can lead to misunderstandings and accusations of being rude or discounting or not caring. So a sense of separateness or isolation can arise. Without the benefit of a diagnosis and support & help to understand what is going on it’s not surprising those with AS can feel alone. Paul then looked at some classic misunderstandings about anxiety and depression. Depression can be an overused term but in clinical depression there is an overwhelming feeling that life is pointless, there is very little pleasure, no self-care or care for others. This is a very serious condition which can require treatment whether or not someone is on the spectrum. It shouldn’t be accepted as just an inevitable consequence of having AS. No-one should be expected to live their life with such a low, sad, disjointed mood. Anxiety often goes hand in hand with depression and both can exacerbate each other. Paul finds depression slows down his thinking and brain power whereas anxiety stimulates it. People can misunderstand reactions to anxiety and to sensory issues. They can be seen as psychotic symptoms. For many people anxiety can manifest itself in the need to do certain things to allay the feeling. There can be mis-understanding about reactions to anxiety such as the need for routines and special interests which are interpreted as OCD. Paul talked about a routine he has to separate his food when eating, which is a way of exercising control when other aspects of life might seem uncontrollable. Anxiety causes reliance on routines and the routines provide an anchor of reassurance. Routines are very important to many people on the spectrum and a change in routine can be very unsettling and produce great anxiety that may seem out of proportion. These reactions may be seen as OCD, and some people on the spectrum do have OCD as well, but the causes are different. In Obsessive Compulsive Disorder the routines and behaviours serve a secondary purpose; they become compulsive because of the fear that something bad will happen if they aren’t followed. This is fundamentally different from having special interests and routines which relate to control.
Paul believes another common example where a psychiatric disorder is sometimes confused with an autistic spectrum condition is in the diagnosis of personality disorders and the use of the term psychopathy (especially in America). Someone with a personality disorder has a rigid form of thinking and behaviours created from childhood, often a difficult or abusive childhood. They grow up creating an inner world to help them cope and this often means disassociating themselves from their own and from others emotions. They seem to carry out inhuman, uncaring acts. Psychopaths as a rule have a great ability to read people’s facial expressions and to manipulate people to get their emotional needs met – so they may become very successful in their chosen fields eg business, criminality etc. But autistic people really struggle to read facial expressions. There is a huge misunderstanding in the idea that people on the spectrum lack empathy when what may be part of the problem is not being able to “mind read” from someone’s facial expression. People with borderline personality disorders are often quite impulsive, reactionary and emotionally over the top. This can also be mistaken for autism. Similarly with bi-polar disorder and Paul cited an occasion when he had become very excited and unable to sleep over a period of days about a new interest and what he considered to be amazing discoveries. This had been seen as manic and similar behaviour in others could be misdiagnosed and lead to medication or hospitalisation, especially as there is an inability to switch off and focus.
Sensory aspects of being on the spectrum can be difficult to verbalise and to make sense of. People with AS may talk aloud to themselves and may say that they can hear several things going on at the same time when they can’t filter out information from background sounds. If this can’t be expressed in a way that a doctor can understand it may be misinterpreted as auditory hallucinations.
In summary Paul said that people on the spectrum do get misunderstood and mislabelled sometimes because they are more highly sensitive than other people or conversely because they can be impervious to things that others notice. The medical profession may be looking for a mental health diagnosis when what is really needed is a better understanding of the person’s autism.
The meeting was opened up to a general discussion about the issues raised. Some of the points mentioned included:
- Empathy, or the perceived lack of it in AS people, is one of the most mis-understood things. There are two main definitions:- an emotional response; or an understanding based on what people are thinking. People with AS have difficulty with the 2nd one but can have an emotional reaction to what they see or hear about.
- Not caring could be a result of Alexithymia. But signs of being stressed are an emotional response and could be a result of caring but not recognising it. People with AS may recognise they are experiencing an emotion but not be able to define it.
- Anyone on the spectrum can suffer from any mental illness as well as their autism. it’s as statistically likely but more complex for the professionals to treat and there can be a misdiagnosis.
- The best way to help someone is by acceptance and understanding. It’s easy to say but difficult to put into practice.
- Having the “label” of a diagnosis may make it easier for friends and family to understand but care needs to be taken about where the information comes from and a degree of flexibility interpreting the label may be necessary. There can be a conflict of understanding between the professional and the person on the spectrum. Everyone needs to be treated as an individual not just in accordance with a label.
- One member emphasised that knowledge and understanding are not the same and this may be apparent in the way some professionals interpret the diagnosis.
- A lot of issues can arise from self-medication and addiction.
- Sometimes people are divided into categories according to the organisation treating them, and services are provided not for the person as a whole but for their addiction, their mental health or their autism, without allowances for any overlap.
- There can be misunderstandings about the nature of violence associated with autism, particularly in children, and also in connection with risk assessment for insurance purposes.
- Some people can hide behind their diagnosis and expect society to conform to their needs and wishes and it can be hard to learn the consequences of poor behaviour, to take responsibility and not use autism as an excuse.
We were very grateful to Paul for his insightful and informative talk. People with AS were able to identify with his accounts of his own experiences and carers/supporters gained a new understanding. Paul can be found on Twitter @Aspienaut and has a blog at http://aspienaut.tumblr.com
Diane Waters © Dorset Adult Asperger’s Support
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