Positive behaviour support - interesting article here

Deepthought said:

This is often difficult for children to achieve when social camouflaging and personal masking prevents and reduces the embodiment of the personality (their individuality) in favour of socially sharing and enforcing personae (collectively ‘desired’ behaviourisms)

This actually gets to the core of many of our family issues, I think, as, for the longest time, it's not really felt safe to simply be ourselves.  And the enormous effort of masking, combined with the awareness of still somehow falling short has been both exhausting and damaging.  Being aware of our autistic identity might have given us a lifeline and better ways of navigating the world, but it has unfortunately been pushed into crisis situations and even then the "experts" we consulted turned out not to be. 

Deepthought said:

Basically I spend a lot of time seriously exhausted and confused due to having stress induced seizures, so people trying to motivate me to do more than I am able to has always proven to be increasingly more counterproductive.

And when, after various educators had already tried and failed to motivate or recognise our neurodivergence and the difficulties to which they themselves were unwittingly adding, the mental health professionals to whom we turned seemed to adopt similar approaches, driving us further and further into ourselves.  So yes, in this case too the exhaustion and confusion have been significant.  And our abilities and inabilities, being "spikey", were misunderstood and framed in terms of their (very limited) understanding, instead of getting behind us and helping us with what we already at some level (although buried deep!) knew we needed.  Such people were invariably well intended but the approaches superficial and definitely coming from a non autistic understanding of behaviour with a world view to match.  
 

Deepthought said:

It is so important that distressed behaviours are not mistaken for challenging behaviours

Exactly.  And as you suggest, ours are largely distressed.  I've used breathing techniques over the years but not exactly in the terms you've outlined, which look really useful and yes, likely to affect what we reflect in our interactions and family dynamics.  One problem in the past has been that all of my breathwork, meditation ad chi kung practices merely offset some of the considerable damage caused by workplace and survival issues, rather than actually improving things for us.  And this fed into the ongoing sense of struggle, with lots of puzzling over why we were still where we were and how to redouble my efforts (couterproductive when I actually needed to let go more, recogonise our neurodivergence and carve things out inthe light of that).

I'm not sure about Tony Attwood's book which I've used a while ago as a good primer on the subject but which seems to fall short on the areas in which I think we most need information and guidance.  I probably need to revisit it but I'd ideally like to find something for ND families where all the members are adults, identification has been very late and considerable damage already done, and interaction with the world is minimal for many of us.  I do follow him on Facebook, alongside many others, and am looking out for something on severe chronic burnout (>several years!) in several family members and the distress (incl. rage and anger) at years of misunderstandings, feeling excluded and missed opportunities for the support we should have had.  I guess we're not alone with that though.   

We're unfortunately not in any position to look at reasonable adjustments as things stand, simply because our young adults are holed up in their rooms, chronically afraid of the world and (understandably I think) no longer open to discussing this.  I'm struggling to imagine what might be enabling other than doing the opposite of what has been done in the past and allowing ever more recovery time, persisting with a cosy, low arousal, low demand environment, and being open to discussion as and when they arise (they mostly don't).  As the years go by, the temptation is to reach out  for "help" but we've had our fingers burned with that one many times before.  Hence my suspicions about PBS.   

Many thanks for your thought on this.  I obviously need to reflect more on it all and maybe have the courage of my convictions instead of casting around for more "unhelpful help" from services.   

Jenny Butterfly said:

Apologies Deepthought, it's a link to a link really, with the full article downloadable from the top right hand corner of the abstract page. 

Thank you for the direction ~ as I often cannot at first or even at all sometimes find the particular box I am amongst all the rest thinking outside of! ;-)

Jenny Butterfly said:

I'm very suspicious about behaviourist approaches, but the values base really matters and I guess could make all the difference.  So the manner in which it combines "the conceptual framework of applied behaviour analysis with the values base of social role valorisation and framework of person-centred approaches" is something I'll have to consider in more detail. 

In terms of behaviourist approaches ~ the basic problem for however many is determining the difference between and the categories involved with environmental conditioning and sociological programming; in relation to how receptive and compatible someone or particular people are physiologically and psychologically to what extent and type of which regarding both.

So in terms of the values base as being:

1.) Prevention and reduction of challenging behaviour occurs within the context of increased quality of life, inclusion, participation, and the defence and support of valued social roles.

This is often difficult for children to achieve when social camouflaging and personal masking prevents and reduces the embodiment of the personality (their individuality) in favour of socially sharing and enforcing personae (collectively ‘desired’ behaviourisms), as in the enforced sense obstruct and with inappropriate injunctions or demands also corrupt the receptive states of mind, involving thereafter more the protective and projective states that cannot as such appropriately facilitate, identify and affirm their personal / primary needs, but more other people’s secondary desires socially or economically. This is where issues involving Post Traumatic Shock Disorder and counterproductive obsessions or addictions have their roots.

With then:

2.) Constructional approaches to intervention design build stakeholder skills and opportunities and reject aversive and restrictive practices.

and:

3.) Stakeholder participation informs, implements and validates assessment and intervention.

They can of course be very useful ~ providing the majority of ‘stakeholders’ do not unreasonably over-rule the person being cared for; and the person being cared for does not unreasonably over-rule their carers.

I got the former from my county council social worker who assumed incorrectly I was doing the latter ~ when I kept telling them that I ineeded practical assistance way more than prompting to do the basic necessities of daily living. They even assumed and were determined to prove that I was trying to blag it when I gave them permission to check this all out with my social worker from the Community Mental Health and Well Being Team, and even after having been corrected by them also ~ they were very reluctant to correct their wording of my county council support plan report; until I explained the most likely legal repercussions for them if they did not do so.

Basically I spend a lot of time seriously exhausted and confused due to having stress induced seizures, so people trying to motivate me to do more than I am able to has always proven to be increasingly more counterproductive.

Jenny Butterfly said:

Most of the parts that concern me are mentioned on p7 but I'm going to ask our local group's tutor on the brief PBS course I'm doing for more details. 

Well page 7 of the document reader (page 5 of the document) covers the professional competence of PBS practitioners – involving more circumstantial rather than peer-reviewed / double blind criteria as covered in Milton’s paper as quoted from in my previous post above, and page 7 of the document (as being page 9 of the document reader) covers who PBS is deemed most appropriate for – which in my opinion give good reasons to at very least be particularly cautious, either way.

Jenny Butterfly said:

I've noticed that she does refer quite often to "challenging behaviours" but also that she sometimes restates these as "distressed behaviours" and focuses on the reasons behind the behaviours as well as how these can reflect the behaviours of others (incl. carers and parents) as well as the overall environment.  The parents on the course are invited to examine their own roles in the distress too.  Plus the person-centred approach is also emphasised.    

It is so important that distressed behaviours are not mistaken for challenging behaviours ~ no matter how challenging a parent, carer or anyone else may find them, particularly if they are stimulating that behaviour by being challenging themselves ~ rather than appropriately facilitating, identifying and affirming a reasonably balanced state of affairs; primarily by being calm within themselves ~ such as exemplifying deep and gentle pelvic breathing where one imagines the lungs are in the pelvis, the nose and mouth are in the chest ~ and each inhalation and exhalation sucks and roots ones feet to the floor, as grounds hypertension and toxic and hypoxic states of body and mind.

If one regularly practices this breathing technique when one is calm and at peace ~ say at the beginning and ending of the day for however many minutes before sleep and arising, it becomes easier over time to instil calmness and peacefulness within oneself and even others more, by way the of reciprocal instinctual mimicry ~ as is demonstrated by yawns begetting yarns and smiles begeting smiles and all that ‘do as you will be done by’ and ‘start as you mean to go on’ state of affairs.

Jenny Butterfly said:

Our own parenting approach has been person-centred for many years but we grow desperate due to multiple issues that we've been unable to overcome as a family so, driven by fear that our situation might never change, I only eventually decided to go on this course.  It may be that I've made a mistake and, although it's so far seemed very respectful and collaborative, I've not come across anything that I think would be helpful. 

Consider perhaps that mistakes enable retakes whereas condemnations or punishments can distract us from recognising mistakes as being invaluable learning resources; where problems become solutions ~ just as much as if they are the right course of action or by complete contrast emphasising or highlighting that which is or otherwise might be better options.

Would a copy of The Complete Guide to Asperger Syndrome by Tony Attwood be of any use to you, as it covers all the childhood to adulthood development stages for those with minimum support needs, and explains all the general problems and solutions involved with family life and education and all that? It does cover early adulthood more but only to a much lesser extent in general, given that there are other authors and presenters covering adulthood issues more specifically.

Jenny Butterfly said:

Some of this is due to the large number of course examples relating to autistic people who also have learning disabilities.  And, even within autism groups, I feel as though I'm in a minority when none of my family have LD - we just need support as an ND family in which lack of earlier identification and understanding has led to severe distress and withdrawal from the world (and I think that's mostly the fault of the cruel world rather than us being inherently "challenging").  

Maybe consider that a disability involves no longer having a previously functional capability ~ so learning disabilities can just be displaced and replaced terms that in Orwellian “Newspeak” actually means being ‘otherwise enabled’ ~ which by way of your description you and your family are in terms of being neurologically divergent.

It seems more probable then that you were inherently “distressed” ~ rather than as having been more behaviourally “challenging” to others in terms of your physiological understandings and psychological comprehensions, in developmental terms individually and collectively.

If though you or your family are still experiencing enough distress that it forces partial or complete withdrawals from the world; it is then from lesser to greater extents an inhibiting disability. This can be very important as a clarification when it comes to ‘Reasonable Adjustments’ in social, public and professional settings, just as is clarifying what is otherwise enabling for yourself or anyone else with divergent senses and sensibilities.

Just to give a bit more detail, the brief course I'm doing is called "PBS for families and Carers" with a focus on understanding behaviour and developing support strategies.  It's run by the local council's carers' group and, from the "kitemarks" at the top, supported by NHS Health Education England, the local CCG, Skills for People and Inclusion North.  

Given that it's for parents/carers, I should maybe have posted on that forum, but I'm coming to it from the perspective of a parent who's also autistic and wondering whether there are any autistic individuals out there whose families have adopted this approach, successfully or not.  

Apologies Deepthought, it's a link to a link really, with the full article downloadable from the top right hand corner of the abstract page. 

I'm very suspicious about behaviourist approaches, but the values base really matters and I guess could make all the difference.  So the manner in which it combines "the conceptual framework of applied behaviour analysis with the values base of social role valorisation and framework of person-centred approaches" is something I'll have to consider in more detail. 

Most of the parts that concern me are mentioned on p7 but I'm going to ask our local group's tutor on the brief PBS course I'm doing for more details.  I've noticed that she does refer quite often to "challenging behaviours" but also that she sometimes restates these as "distressed behaviours" and focuses on the reasons behind the behaviours as well as how these can reflect the behaviours of others (incl. carers and parents) as well as the overall environment.  The parents on the course are invited to examine their own roles in the distress too.  Plus the person-centred approach is also emphasised.    

Our own parenting approach has been person-centred for many years but we grow desperate due to multiple issues that we've been unable to overcome as a family so, driven by fear that our situation might never change, I only eventually decided to go on this course.  It may be that I've made a mistake and, although it's so far seemed very respectful and collaborative, I've not come across anything that I think would be helpful.  Some of this is due to the large number of course examples relating to autistic people who also have learning disabilities.  And, even within autism groups, I feel as though I'm in a minority when none of my family have LD - we just need support as an ND family in which lack of earlier identification and understanding has led to severe distress and withdrawal from the world (and I think that's mostly the fault of the cruel world rather than us being inherently "challenging").    

Yes, plus the Ann Memmott link is also now circulating on Facebook so the subject is getting more of an airing in response to this article.  And I'm really interested because I'm always looking out for more information which might help our family, whilst being guarded that I don't choose anything that could be damaging.

Now, in the parent group I'm in, we're doing a brief PBS course and, in this course, a person-centred, empathic and understanding approach is being emphasised and, to my mind, bears no relation to what i've heard about PBS and ABA in other online communities.  But I remain concerned about its underpinnings.  What I'm experiencing so far more closely ressembles what Ann Memmott describes as the work of really good PBS teams who start from a  person-centred, trauma-informed position and emphasise collaborative listening (in the following link from around 16.20 minutes in, with the question on the link between PBS and ABA beginning around 14.52).  But this makes me question what makes the approach we're being taught PBS, rather than just a gentle, person-centred approach.  I need ot ask at the final session in a couple of weeks' time, i think. 

www.youtube.com/watch

Exactly.  They do co-occur quite often, but the majority don't have LD.  Yet in the various groups I join locally, I'm in a minority and the dominant needs and topics for discussion seem to revolve around LD, not autism. 

The link you provide as follows:

I have just looked at the Twitter thread. What I know about PBS is that it is much like ABA and therefore harmful. PBS is sometimes just a different way of describing the same thing. Thank you for the  thread it is very informative.

This thread was JUST posted on Twitter about PBS twitter.com/.../1515251990988836865

Though some autistic people have learning difficulties and some have intellectual disabilities, there is no mention of either in the clinical diagnostic criteria for autism. This is something that very many organisations, governmental or charity, seem to forget most of the time.