Yo Dunn2 MobileThis blog is my contribution to airing issues in those areas in which I have usefully overlapping expertise: Autism, Law, Education, Social Care, Health and Criminal Justice.

Some of my Care Act focussed posts are also available on my guest blog at Schwehr on Care

But here I also blog about broader issues.

Feel free to contact me if you would like to discuss any of the issues I raise further or if you have questions or topics you would like to see me post about here.

Good social work is good social work. Why do I need to do anything differently for autism?

Committed to non-discriminatory practice, it is not surprising that this is a common social work view. There was a time when similar views were espoused around ethnicity and culture. A child is a child and good parenting is good parenting, so it shouldn’t matter whether a child is placed with a family from the same background and culture. Gradually social work theory and practice developed to recognise that doing things the same way for everyone does not avoid discrimination – it actually promotes it. Now it is autism’s turn.

Modern understandings of autism increasingly recognise that the autistic view of the world is a fundamentally different one. Not automatically or necessarily wrong or deficient, but distinctly different. Just as it is possible for well-meaning professionals to inadvertently discriminate against minority ethnic or cultural groups through lack of knowledge of a range of cultures, similarly there is a constant risk for professionals of doing more harm than good by wading into the lives of autistic clients without sufficient understanding and awareness of neurodiverse ways of seeing the world.

  • Seeking to comfort and reassure, a gentle touch on the hand or shoulder will help
  • The client who turns away and says “No” is choosing not to engage with you
  • Someone who speaks fluently and has a good vocabulary is capable of telling me their needs and views
  • He spends so much time alone and rarely goes out, so he is lonely and needs support to go to groups and make friends
  • She keeps saying that she wants to clear up all this clutter but it never happens, so she doesn’t really want to do it. I need to motivate and persuade her.
  • He can tell me all the reasons why that behaviour would be dangerous, so he understands the risks.
  • The psychology report says her global IQ score is below 50, so of course she doesn’t have capacity to decide which is the most appropriate placement for her
  • He won’t look at me so he isn’t engaging with what I am saying and doesn’t understand

None of these are safe conclusions where a client is autistic. Touch may cause pain and distress. Lack of eye contact doesn’t mean an autistic person isn’t listening and isn’t a reliable guide to comprehension. Verbal utterances may be scripted or echolalic and not entirely voluntary. Those with fluent speech can have profound difficulties communicating effectively and actually achieving mutual understanding of words and concepts. This can often include the ability to recite learned information (such as why something is dangerous) without actually understanding how the information might apply in a range of circumstances. Some autistics find social interaction distressing and far prefer to be alone. Many autistic people struggle with executive function and are unable to initiate or sustain tasks despite being motivated to do so. Global IQ is woefully meaningless in autism because autistic individuals invariably have a ‘spiky profile’ and can be highly able in some areas, whilst being profoundly disabled in other areas.

I could go on. And on. And on.

Do social workers need to become experts in autism? Not generally. But just as with cultural awareness, it is vital to gain sufficient knowledge and understanding of a fundamentally different way of being, to be able to avoid doing harm through ignorance.

Who are people with a learning disability and/or autism?

The National Implementation Plan for Transforming Care, published a fortnight ago, raises more questions than it answers about how the good intentions about closing hospital beds and improving community provision are going to be brought about in the real world. The jazy PCP diagrams, co-produced "National Service Model" and graphs projecting falling inpatient numbers are aspirational, yes. But are they really going to produce change?

It seems to me that the key is whether community provision can be sufficiently improved to prevent admissions in the first place (as well as providing a viable discharge plan for those already there). So what's the plan?

Mostly it seems to be founded on Positive Behaviour Support - not a good start if you understand the concern about PBS's relentless focus on 'triggers' to the exclusion of actual causes of distress. PBS is fundamentally about training 'good' behaviour, without recognising that 'challenging behaviour' is likely to indicate distress and actually addressing the source of the distress.

But there is a broader issue here. All of these high minded goals are focussed on "people with a learning disability and/or autism". This term is used, without variation, throughout the report.

The report argues that "people with a learning disability and/or autism" are a "highly heterogeneous group" and that "Some will have a mental health problem which may result in them displaying behaviour that challenges. Some, often with severe learning disabilities, will display self-injurious or aggressive behaviour unrelated to any mental health condition. Some will display behaviour which can lead to contact with the criminal justice system."

But never, not once, are autistic individuals referred to separately and distinctly. At no point is it considered which, if any, of the described issues or behaviours might be directly or indirectly related to autism itself and the relevance of that to effective behavioural prevention/management. At no point are autism and intellectual disability disentangled or dealt with separately.

Of course they can and do co-occur. But the behavioural issues which underlie the presence of these individuals in overly restrictive settings do not occur independently of whether or not an individual is autistic. Behaviour is communication. And autistic people communicate very differently.

It seems to me that no amount of person-centredness or positive approaches to behaviour are likely to make sustainable difference on the ground unless they are accompanied by vastly improved autism knowledge and understanding amongst those supporting those autistic individuals who make up a very substantial percentage of this group.

What percentage I hear you ask? I can't tell you, because the statistics only count ... yes you guessed it ... "people with a learning disability and/or autism"

“Google it” – how NOT to do advice and information

Those local authorities working hard on implementing the Care Act know that section 4 says that
“A local authority must establish and maintain a service for providing people in its area with information and advice relating to care and support for adults and support for carers.”
Those who have read a little further into section 4 know that this service must provide information and advice across an extensive range of areas, including of course essential information about how the social care system under the Care Act operates in that local authority’s area (s.4(2)).

Having been in the room when several local authorities were struggling with working out how they might go about collecting and co-ordinating all the necessary information I am well aware that this is a demanding new requirement on local authorities. Many authorities have worked hard on innovative ways of drawing together information and have been disseminating their shiny new leaflets, posters, websites and other resources since the beginning of this year.

Not so everywhere however.

Just last month (4 months after the Care Act came into force) a client of one local authority was told that her care package was going to be reviewed and that a new assessment would be carried out under the Care Act. She had the temerity to ask for details of that authority’s assessment process under the Care Act.

The response she received (now framed for posterity on my wall) would seem to me to fall a little short of what the Care Act had in mind. Attached to a copy of her previous assessment, on a compliments slip bearing the local authority’s letterhead were the handwritten words:

“Information re: the Care Act can be found via the internet.”