Saturday 2 November 2019

From Secure Accommodation to Supported Thriving: Steps for autistic young people?

Young woman sitting cross legged on a stool, imagining what her new accommodation will look like.

These are personal reflections, not professional advice of any kind.

Sometimes, autistic young people are placed in secure accommodation.  Perhaps because of a mental health crisis.  What happens when they recover enough to transfer elsewhere?

One of the questions often encountered is, "How do we find the right community placement, and how do we make that transfer in a relaxed way for them?"

Let's think about some of the absolute basics of this.  It's not a definitive list or professional advice for a particular individual.  It's a start to good thinking and planning.  I write it from decades of personal experience, as someone who was carer to a desperately ill close relative for many years, and had to engineer those transitions.  And as an autistic person who works with teams planning exactly these things, with the young people, and with their families. 

First, clearly any autistic young person who has been in secure accommodation will have had a tough time.  Perhaps separated from family and friends. Perhaps coping with living in tiny spaces with terrible sensory difficulties; flickering fluorescent lighting, endless echoing noise from around them.  They may be exhausted and desperate to get to somewhere better...but also very afraid of having the mental and practical resources to cope with something new.

What to do: (This applies to families, and team members, working as a team to support that young person and their own aims, where those are realistic, of course). 

Work out what's possible in terms of the next step.  Find a couple of possibilities for places they could move to.  And find out everything you can about that building and that location.

I start with a personal visit.  

I am using autistic hearing to detect soundscapes that others miss.  
I am using autistic vision to detect flickering or intense lighting that may need thought.
I'm thinking about the odours in a place.
I have a decibel meter with me to measure sound levels, and I'll move from room to room, standing in each corner, seeing what it detects.  
Then thinking, 'is this going to get noisier once people rush hour traffic....if a school nearby has breaks or school traffic....if there's noisy aircraft overhead". 

I'm looking at shadows and thinking about where sunshine may shine in, blinding people.  Where trees are likely to cast shadows in  winds, causing a swirling pattern of confusion on the floor.  All sorts of things can be a 'frightener' for those who see and hear differently, and a lot of those things may be overlooked by non-autistic people.  Not a fault - just a different set of experiences in encountering buildings.  Below, a photo of a surface with leaf shadows on it. Imagine those as a swirling pattern in the wind.  Disorientating for so many of us. So I am working out where a young person may walk, and how to make it safe for them.

I look round the neighbourhood.  What's out there?  If you have someone who loves nature, how do they get there without having to navigate heavy traffic and crowds?  Is there a safe garden area?  What's the sound level like out there?  Is it overlooked by a load of houses or flats, which can be intimidating?   I'm mindful of water, given that a lot of autistic people struggle to see the difference between water and grass (for example) when in sensory stress.  This, how I see a pond and tree, if on the edge of shutdown.  I'm sensible enough to stop.  Younger people or those in greater distress may run.

So somewhere without open water nearby may be a better choice.  Also, think about children's playgrounds. I've seen placements break down because the autistic young person is distressed by playground noise at random intervals through the day.  Think about any autistic young person who sometimes needs to take their clothes off to feel comfortable; are there windows facing onto such public areas?  If so, can those be given obscured glass to shoulder height, for example?

I think about the layout of the property.  Is their bedroom going to be in the quietest possible corner of the property, away from thudding up and down stairs, away from noisy central heating pumps clunking and loos flushing?  Those things can be a living hell for people in a seemingly nice property.  Carpeting can really help with some of the noise transfer from room to room.  In fact, carpeting is one of the biggest obstacles to success, for many.  Highly patterned carpet can make transfer between rooms into a hell.  Rough carpet can cause pain in every single step they take on that surface.  A soft, moderately thick, cleanable carpet in a neutral colour is often a wise choice.  Really soft rugs by the bed help, too.  Those first moments when you swing your feet off the bed.  Think about that bed.  Find a quiet mattress, quiet pillows, a quiet duvet, ultra-smooth sheets and pillowcases.  I'm serious about how noisy some beds and pillows are to our hearing.  Lie on it.  Move. Really listen.  Crinkle, sproing, crinkle crinkle, wonder so many autistic people are awake half the night.

OK, so we've found some possible properties?  Let's show our young person.  No, not in person yet.  By photo and video, description and gentle chatting about it when they can.  A virtual walk through, quietly, slowly, so they can see what's there.  With plenty of time to process it.  No quick decisions.

Let them think about for a couple of days, if possible.
If they want to then visit, you are going to plan this like a military operation.  Er, without camouflage kit and tanks, I hasten to add.

Who is taking them?  Make it their choice of absolute favourite person, their most trusted guide, if possible.  And a quiet kind spare person.

How will they get there?  When?  How long for?  Plan that journey with them.  Google Street View can really help.  Which car or minibus?  What can they take in the vehicle to help them keep their brain operating at its best?  Don't judge.  If it works, it works.  Keep chatter to subjects they want to talk about - their favourite hobby, in ways that they are comfortable with.  Chatter of course can be through technology or picture, sign or sound, not just words.

What will they be wearing for this trip?  Think about their choice of most comfortable outfit possible, including their comfiest shoes and socks etc.  Keeping everything really low-key, really relaxing.  The rest of the day's routine known and predictable.  A known and predictable leaving time, arriving time, amount of time there. returning time, and what's next.

Let them know how to signal they need to leave, and give them confidence that they can do so any time, without fuss.  If they can't make it in through the door, totally OK.  Never knowingly overface them unless there are 'life or death' reasons to do so.

Let them know where a quiet corner in that new place will be, if they just want to 'be' in it rather than explore.  Or back to the vehicle to chill out for a while.

Don't pile a load of choice onto them, e.g. "What colour would you like the walls, do you want to choose a new sofa, where do you want your bed", etc.  First visit, their brain is filling with the sensory stuff.  Add social stuff on top, and it's risking a brain event.  If there's others in the accommodation, best if they can be doing something quiet elsewhere, where possible.  Lots of us benefit from a choice from only two options, rather than endless ones.

Know your young person.  Watch for signs that they are reaching 'can't ' and work with them to guide them back to the vehicle and back to their current accommodation, quietly and gently.  Keep chatting to an absolute minimum.

You may have to repeat that a number of times to get them feeling really confident that they can go there, cope, and return.

Think it's going to work?  OK, who's going to be their fabulous, kind support team in that new location?  I'm not that interested in how many behaviourist qualifications or autism qualifications people have. In fact, behaviourists often have to unlearn most of their training to be any use to autistic people, as they are trained to alter who we are, not think about their own interactions and impact on us.  Yes, there are some good and kind people out there with a positive-behaviour-support past.  But it's absolutely no guarantee of that vital relationship and trust.

Aside from essential training and essential safety checks,  I'm interested in one thing. The only thing proven to be a factor in success: are they someone I'd trust with my young person's life?  Are they the sort of person who is just so pleased to be in the life of this young person, and wants the very best for them, as a friendly equal?  Yes, of course a leader when needed, and a wise guide.  But truly respecting that young person's boundaries and past, and willing to listen, learn, and share cheer with them.  It's that relationship that is critical for this transition to work.  Calm, friendly, relaxed, personally confident but in a gentle way, not an overbearing one. Willing to accept they'll make mistakes.  Willing to take personal responsibility for their fair share of communicating differently.  Willing to let the young person be their authentic selves, in safety of course.  I see rogue teams who strip a young person of everything dear to them to get 'control', with use of restraint, coercion and physical intimidation to get results.  I won't have that.

Any relationship takes time to establish, so your fine young person has to meet them and decide if this is the right person for them.  Or the right team.  Then gradually share more time with them.  Do they respect the autistic person's own communication methods?  Do they understand that autistic people use different body language and movement?  That they have a different culture, a different way of encountering objects?

What about buying them new things?  Please don't whizz them straight out to the shops.  Those are sensory hell. 

What do I mean?  Watch this.  Two minutes.  Turn the sound right up.  Brace yourself.

Wow, eh?  That was just two minutes.  Imagine what it's been like in some care settings.  Imagine what it's like in noisy 'social spaces'.  In supermarkets.  In some shared accommodation with shared eating spaces.

So much can be looked at online these days.  If they really really want to go to a shop for new things for the new accommodation, plan it as carefully.  Walk them through all the steps, online.  Work out whether they will need noise cancelling headphones, sunglasses, baseball cap, or whatever else works to take down sensory load.  Watch for their signal that they need to get out of there fast; some will not know their own boundaries with this, so plan a short visit at a quiet time of day.  And absolutely loads of downtime afterwards with their favourite things.  It's as exhausting as running a marathon, for us.

There will be some back-steps as well as successes.  Let them know that they can trust you.  That you're not going to push them further than they can go.  It may well trigger big anxiety for a while, so being that utterly reliable presence will get them through so much.

Let them be them.  Not some non-autistic person you'd prefer.

You've no idea how much of a blessing it is to be allowed to be us.  Us, not an inauthentic poor copy of a non-autistic person.  Actually us.  Able to communicate as us, move as us, encounter objects our way.  Learn our way. Socialise our way.

If all has gone well, you may have a young person able to restart their life and really thrive.  Step by gentle step.  With family support.  With good caring teams, good enablement by occupational therapists, trauma-trained & modern-autism-trained counsellor or similar therapists if needed.  Each relationship one of re-establishing 'are you safe?' 'do you let me be me?'  And with trusted autistic specialists who can help interpret, help problem-solve when situations arise.  That's what we're here for.  Vast experience amongst autistic specialists.

These are some possible tips for success, from personal experience, meant only as a thinking point.  It is not in any way meant as individual advice for a particular situation. For that, you'd need to hire an adviser.

You'll have your own ideas, too.  Each young person is an individual, with their own individual path ahead.

Whatever path lies ahead, may your young person truly thrive, and may you as parents or carers find the relief and relaxation, support and cheer you need also.