Background
#7Daysofaction started on Monday 18th April 2016. The campaign has been launched by the
mothers and family members of people with learning disabilities (and often,
autism) who are currently trapped in Assessment & Treatment Units (ATUs).
These people
have committed no crime but in many cases they are treated worse than
criminals. Some have died as a result of neglect and poor care in state funded
institutions. Most have not been diagnosed with a mental health
condition, yet are detained under the Mental Health Act and they remain in
Units for years at a time.
There are
currently 3000 people in ATUs and the average cost of being kept in an ATU is
£3500 per week…..yes, per week. That’s your tax spondulas right
there. All these detained folk want is to be living back home with their
families or living in their own homes with support. They just want an #ordinarylife.
In this blogpost,
I want to look at why young people end up in ATUs and what can be done to
prevent this happening.
What
triggers the crisis?
Here
Jan Walmsley observes that ‘Frequently, as young people with autism and complex
needs get into their teens, not only do they struggle with the changes
associated with adolescence, they also begin to face the truth that their lives
will not be like those of their siblings. They will not leave school, get a
job, go away to Uni or College, they are unlikely to get a girl or boyfriend,
their lives will probably be sheltered and limited. There is a reaction, a
change in behaviour, often violence or depression.’
Let’s look
at some of those key phrases:
- Begin to face the truth
- Not like the lives of their siblings
- Won’t get a job
- Won’t go to college or Uni
- Unlikely to get a girlfriend or boyfriend
- Sheltered and limited lives
Yep, I too
would do my nut if I felt that that was what was ahead of me. And so would
you. A reaction, a change in behaviour,
is a perfectly natural human response to this kind of coming of age crisis.
And
meanwhile, what’s going through our heads in parallel parenting universe is
something like ‘What will happen to him when I die? How will he cope? Who will look after him?
Who will love him?’ Some of us know, in
the darkest depths of our souls, that when we die, if the system hasn’t
changed, our beloved young people will end up in institutions. Can we rely on the system changing?
Let’s go
back to those bullet pointed phrases and dig a bit deeper.
‘Begin to
face the truth’………….'not like the lives of their siblings’………..the young
person, perhaps, is only just starting to realise this but the supporting
services (health, education and social care) have known it was coming for a
long time.
‘Won’t get a
job’………..'won’t go to college or Uni’………'unlikely to get a girlfriend or
boyfriend’………..'sheltered and limited lives’……..*cringe*, *sob*
Why do
services only talk about ‘transition’ at 16 or 18 when they could have been
supporting that young person from a very early age to develop the competencies
and capacities we all need to be independent, to make and maintain friendships
and relationships, to live independently?
What are these
competencies and capacities? They are
not degrees or GCSEs or qualifications of any kind. They are things that develop unconsciously as
part of the natural interaction between child and caregiver in the early
years……the interpersonal engagement (reciprocal back and forth between two
people) that Peter Hobson has called ‘The Cradle of Thought’. To understand more about what’s going on
here, we need a whistle-stop tour of child development. I’ll leave that to someone far more qualified
than me, Dr Steve Gutstein:
In typical development,
‘infants at around 6-7 months begin to show signs of an insatiable drive
to grow…to stretch, learn and explore. Parents, in turn, are instinctively
ready to promote this growth and eagerly provide opportunities for the child to
explore.
For infants
with autism or other developmental challenges, it’s a different story. Their growth-seeking drive doesn’t develop at
this time and, instead, the drive for stability becomes their norm. Instead of
venturing out, these kids shrink back, shy away and pull in. Consequently, they
disengage from their parents who are intuitively trying to provide activities
for growth.’
The whole
intuitive interface between growth-seeking infant and
growth-opportunity-providing adult breaks down.
The vehicle that provides the ‘cradle of thought’ has gone and children
then miss milestone after milestone in a domino effect that eventually lands
them in a Paediatrician’s clinic undergoing an ADOS assessment.
The
milestones that are missed are those relating to using the thinking of other
people to decide what to do when faced with uncertainty. They are the milestones that facilitate
emotional self-regulation, social reciprocity, self-actualisation, social
understanding. These are the milestones
that underpin the competencies that lead to making and maintaining friendships
and relationships, securing meaningful employment and living independently.
Now don’t
get me wrong here – I know some adults with autism who have worked extremely
hard to teach many of these competencies to themselves……but what a Herculean
effort to have to make to do something that (most!) typical people can do
without even having to give it a second thought. People with autism have described this to me,
saying it’s like having to operate in first gear when everyone else is cruising
along in 5th. How utterly exhausting.
Missed
milestones. Missed……..milestones.
Do we know
what these milestones are that children with autism and other developmental
difficulties fail to master (or only master in part)? Yes we do.
Do we know how these milestones are mastered? Yes, we do. (I appear to have started
channeling President Obama).
Can we help
our kids and adults with developmental challenges (and regardless of any LD) to
have another go at mastering these milestones……those of you who follow my blog
regularly know that I am blogging on an ongoing basis (with video footage and
commentary) about how this is done in one particular school and about how many
parents around the world are doing it with their infant, teen and adult
children. Some of what these older folks
are now able to do include the abilities to:
- See different ways they might approach challenging situations
- Imagine productively
- Infer what others are feeling and thinking
- Generate multiple possible ways of responding to a challenge
- Use feelings in a productive way to make judgements when the environment is too complex
- See decision-making as a process where we balance different variables
The best
part is that they can do all of that reflexively – subconsciously – so they are
not having to perpetually operate in 1st gear.
They can respond more adaptively when faced with challenges that would
previously have activated their ‘fight or flight’ response. This has enabled them to live more
#ordinarylives because they are no longer withdrawing from uncertainty, novelty
and change…..they are embracing it, enjoying it and even seeking it out.
Di’s son
Nick, now nearing 20 years of age, has autism and LD. Here, Di writes about how, following many years of
hard work helping Nick to master these milestones, he 'cruises along and takes
life in his stride’. (I promise we
didn’t collaborate on the driving metaphor). She notes how ‘He doesn't need a
rigid schedule and he remains relaxed if I need to change our plans. It's
fabulous to have a flexible teen. The stress we lived with in the early days is
now a distant memory.’
My own son
has gone from using what would be described in professional circles as controlling,
oppositional, demand-avoidant behaviour to being a much more socially
reciprocal, thoughtful, flexible, self-aware young man who is genuinely
interested in other people, can take on board and use their perspectives in a
discussion instead of being on his own agenda and is much better able to
regulate his own emotions when faced with challenges. He also helps me to regulate when I get
overwhelmed or frustrated. Right now, he
is out with his friend (his friend!!) - a recent development (he is 16 years old). They are walking the dog and I am welling up
just writing that. #ordinarylife
It’s taken
us 10 years and it has been hard work (same for Di and Nick). We have done it with everyday stuff as the
vehicle for our ‘cradle of thought’. Our
vehicle ‘stuff’ included things like loading the dishwasher, putting the
washing out, playing games, baking and cooking……LOTS of baking and cooking,
which is why my blog is called ‘Food for Thought’.
I was not
the teacher. Nothing was scripted or
formally taught….we just hung out together and had fun. We both learned an enormous amount and our
mother and son bond is now very close.
We still
have a long way to go but I am now quietly confident that my lad has got some
of the foundational competencies and capacities he needs to allow him to live
at least a semi-independent and fulfilling life. We will keep working on mastering missed
milestones.
I have
written in the past about my view that we need to be supporting people with developmental
challenges in all settings (not just education) to master missed milestones.
A few years
back, I attended the National Autistic Society’s Annual General Meeting where I
met a 64 year old fella with Asperger’s syndrome who, I discovered, lived near
me. I gave him a lift home and on the way he told me about his life. He said
that because his parents did not understand him, he had often been ‘farmed out’
to relatives; school had been ‘a nightmare’ and he had had pervasive
difficulties holding down a job (despite a MENSA level IQ); he had got into a
terrible financial tangle because he didn’t understand anything about money
unless it was cash, and he had missed out on two opportunities he identified
(with hindsight) as potential relationships because he couldn’t read the
signals at the time.
My friend
identified his biggest lifelong challenge as the difficulty he has responding
adaptively to the myriad of interpersonal challenges related to navigating the
world on a day-to-day basis.
Another
adult with autism who is a research associate at the University of Maine wrote
that ‘social encounters are dynamic occurrences that require spontaneity,
flexibility, and adaptation’.
All
encounters, in every sphere of life, are social encounters. Such adaptation is
often required on a moment-to-moment basis and it is these difficulties with simultaneously
processing lots of information from multiple channels as it changes on a second
by second basis that are one of the most difficult challenges for those with
autism.
General
awareness about autism and support services for people with autism have
undoubtedly improved since some of my friend’s earliest experiences, but the
principles that drive the provision of health, education and social care
services for people with autism (with or without LD) in this country have not
moved very far at all in the last 40 years. Cutting edge research into the
brain, autism and child development is giving us a clear message about what can
be achieved for people with autism, yet despite this, our services are still compensating
for the difficulties resulting from autism instead of addressing them.
The
mainstream response to the anxiety resulting from difficulties coping with
uncertainty in children and adults with autism has historically been to adapt
the environment so that uncertainty is minimised and to entrench people with
autism in the predictability of routines. In some ways, it is an understandable
response, as predictability decreases anxiety, but the consequence is that we
amplify reliance on routines instead of helping people with autism to develop
the ability to produce a more adaptive range of responses and remove the need
for a ‘fight or flight’ response.
Those who
follow my blog will know that the school I mentioned earlier on in this post is
Bright Futures School, which me and hubby set up specifically so that we could
embed a social communication programme into the curriculum. The social communication programme is what we
use to work on the missed milestones.
It is my
firm belief that a social communication programme is crucial for every child
with autism and other developmental challenges in an educational setting and
that it should be provided via Education, Health and Care Plans. The need for social communication programmes
of this type is even recognised in the NICE guidelines ‘Autism in under 19’s:Support and Management’
I am
currently working on devising a model EHC Plan that clearly outlines social
communication needs and includes social communication provision in each of the
sections relating to education, health and social care and am in discussion
with my local authority about exactly what this should look like. I intend to anonymise it and share it as soon
as it’s finally agreed.
In the
meantime, if your child or young person hasn’t yet got an EHC Plan, please have
a look at this.
If you want
to have a look at a social care assessment (children) that identifies social
communication needs, have a look at this.
If you would
like to investigate making a legal case for social communication provision to
be included in an EHC Plan, have a look at this.
Prevention
is better than cure. Let’s use those EHC
Plans to get the right provision and support in place that will enable us to
keep our kids out of ATUs and enable them to develop the competencies and
capacities that will allow them to have #ordinarylives as much like those of their
siblings and peers as possible.
Connor (LB)
