Steven had parts 1 & 2 of his mental capacity assessment last week to determine if he has the capacity to manage a tenancy: part 1 was on Wednesday at our home and part 2 was on Friday at the day centre. I haven’t heard the outcome yet but I can guess what it will be. I didn’t attend either assessment. I knew that it was such a pointless, superficial exercise that I chose to earn the £250 that I would have lost by attending. I left it up to the support workers instead.
Today, I got the support worker’s feedback on how it went and they all presented the same story. Steven just repeated back every question he was asked. “Do you know what a landlady is Steven?” – “What a landlady is”, came the reply. Classic echolalia.
This feedback left me a bit sad. I can’t remember that last time we encountered echolalia at home. I’ve always seen Steven falling into echolalia as a sign, either that he hasn’t a clue what the person is talking about, or he is too intimidated by the situation to think straight. Everything I’ve read about echolalia and autism is that it’s a typical response to a momentary anxiety at not understanding or feeling mis-understood. In a way, it’s a very normal response. When we’re not understanding or feel intimidated or out of our depth, we tend to freeze. We certainly don’t act ourselves.
It’s a good sign that we haven’t had any echolalia at home for years; it was such a shock to hear Steven had fallen into it because I’d forgotten what it was like. But what a damning indictment of the process and the people involved in the process, that something that “has” to be done can activate such a negative response. It’s not just me, the support workers and family and friends that can communicate with Steven without triggering echolalia: cab drivers, plumbers, shop assistants all find a way of communicating that he can understand. And most of these are just fleeting interactions, but the person has empathy and takes the time to word their communication appropriately. We only ever encounter a problem with echolalia with a professional. But not all professionals. I remember reading the transcript of Steven’s first interview with Sophy Miles, the official solicitor back in 2010 and choking up at how well she had tuned in to him. Likewise, I was present at Steven’s interview with the court appointed psychologist; they got on like a house on fire and I don’t recall a single moment of repetitive speech, although the questions were quite demanding. The absence of echolalia is a sign to me that things are going well; the presence of it indicates a problem. And usually it is framed that the problem is with Steven; it couldn’t possibly be that the problem is with the person communicating with him.
Steven and I used to have running joke about his echolalia – he used to call it “talking like Fred Elliott”. Steven likes me doing impressions and one of his favourites is the genial Coronation Street butcher’s last words: “Be happy Audrey. I say, be happy”. It was a poignant scene. So, in the past when we have been in important assessments or professional’s meetings and I can see Steven getting worked up and slipping into echolalia, I say: “Steven’s doing his…..?” and he replies, “Steven’s doing his Fred Elliott talking”. And he laughs and the anxiety is dissolved.
It’s a shame though isn’t it, that the only outcome of a mental capacity assessment is to trigger this typical autistic sign of deep anxiety, that he had outgrown many years ago.
Love, Belief and Balls 
Thanks Mark for such an insightful post, I hope Steven is ok now the assessment is over and that he fares well for the later parts.
Your post made me think of an excellent old article about ‘competence’ (ie. capacity) by Susan Stefan, who wrote this:
‘Far from being an internal characteristic of an individual, competence is a value judgment arising from an individual’s conversation or communication with individuals in positions of power or authority. Essentially, a judgment of incompetence is a judgment by those in power that the conversation has broken down. This failure of communication may be due entirely to one side-a patient in a vegetative state-or the other-a doctor who concludes that a patient is incompetent simply because she disagrees with his recommendation. More often, the failure of communication is due to the dynamic between the two people.” Due to the fact that “[w]hen a system of power is thoroughly in command, it has scarcely need to speak itself aloud,” the whole focus of a competence inquiry centers on the alleged incompetent person to the exclusion of the powerful side of the dialogue. Therefore, incompetence is seen as the attribute of the less powerful person and all failures of communication are attributed to her.’
(STEFAN, S. 1992-1993. Silencing the Different Voice: Competence, Feminist Theory and Law. Miami Law Review, 47, 763) p766-7
I hope you don’t mind, but I’ll be adding this post to my reading lists on capacity.
Thanks Mark for such an insightful post, I hope Steven is ok now the assessment is over and that he fares well for the later parts.
Your post made me think of an excellent old article about ‘competence’ (ie. capacity) by Susan Stefan, who wrote this:
‘Far from being an internal characteristic of an individual, competence is a value judgment arising from an individual’s conversation or communication with individuals in positions of power or authority. Essentially, a judgment of incompetence is a judgment by those in power that the conversation has broken down. This failure of communication may be due entirely to one side-a patient in a vegetative state-or the other-a doctor who concludes that a patient is incompetent simply because she disagrees with his recommendation. More often, the failure of communication is due to the dynamic between the two people.” Due to the fact that “[w]hen a system of power is thoroughly in command, it has scarcely need to speak itself aloud,” the whole focus of a competence inquiry centers on the alleged incompetent person to the exclusion of the powerful side of the dialogue. Therefore, incompetence is seen as the attribute of the less powerful person and all failures of communication are attributed to her.’
(STEFAN, S. 1992-1993. Silencing the Different Voice: Competence, Feminist Theory and Law. Miami Law Review, 47, 763) p766-7
I hope you don’t mind, but I’ll be adding this post to my reading lists on capacity.
Lovely post and great insight into a little more about steven. I enjoy your posts every week when I catch up thank you. I hope the outcome is a positive one and things start to move in the right direction. But me been cynical it properly wont do and if its anything like the assessment process we have been through with my young son who happens to have an undiagnosed genetic condition thrown into his complex learning disability then I really emphasis the stress you go through. Thank you
[…] did not know how to communicate with the person properly. Mark Neary has talked about this (and here). But the evidence to the Committee also contained horror stories of people with disabilities […]