Staying Alive: autism and risk

risky flight 003In my last post I mentioned, as a postscript, that I had received ‘devastating news’ about Dylan’s proposed placement at a house I found following a moment of ‘magical thinking’. A visit to the house had gone well, as had a home assessment, and I had no reason to expect any hitches with Dylan’s referral. I was optimistic that we might be able to start transition during the Easter break so booked leave from work and cleared my diary. Imagine my alarm when, on the run-up to the holiday, I received an email to say there was a problem and that we would need to consider other options.

I felt broken: after the false hopes and halted starts, the dead ends and aborted plans, here we were again. I could have cried. Oddly, my first concern was short term rather than long. I have been managing without short breaks since mid-December when Dylan’s provider decided they could no longer support him. I struggled to find a replacement setting and in the end gave up, thinking that as Dylan was set to move into a residential placement it would be confusing to introduce somewhere new for such a short period. I would manage without, I said.

It has been hard, though, managing without. I used to look forward to my night ‘off’. I have missed being able to work late, swim, go to the cinema or out for a meal once a week. I have missed having the house to myself overnight and being able to go to bed when I want and go out in the morning without having to bathe and dress and feed Dylan first. I hadn’t realised just how much I had missed this, and how in need of a night off I was, until I read that email. So while I felt weary at the thought of continuing the search for residential provision, it was the realisation that there would be no early solution to my need for a night off which caused the devastation.

Evaluating risk

risky flight 009Still, I didn’t cry. I was stoical, this time, not out of heroism or resignation but because the setback wasn’t due to funding problems but rather to ‘concerns about standards of care’. This puts an entirely different complexion on disappointment; parents may be in need of a night off, and young adults in need of a home, but not enough to compromise on safety. So the part of me which was disappointed at the news was outweighed by the part which was relieved. Happily Dylan had not been there; he was still safe with me.

But after this disappointment and relief the news settled down differently. I couldn’t make any judgements about the situation, I decided, without more information. Whatever had or had not happened, I reflected, may or may not have been a risk to Dylan had he been living there. All sorts of things get tangled up in safeguarding policy; clearly (oh so clearly) we need the legislation, but we also need to understand its application. So although my first reaction was to abandon all thoughts of the house as a future placement for Dylan, I later found myself drawing comparisons (albeit tangential) with my own experience.

I recently prepared two groups of students for their annual school placement. The administrative team responsible for sourcing and supporting these placements do a tremendous job; many of our partnership schools have been with us for decades and only rarely do we ‘lose’ an organisation. We are, however, obliged to stop placing students at a school if it goes into ‘Special Measures’ as a result of an unsatisfactory inspection. There are a variety of reasons for a school being placed in Special Measures, not all of which are relevant to the quality of support a school can provide to students. It has been suggested, in fact, that it is in schools facing the toughest challenges that the best support can sometimes be found.

This was certainly my experience in the 1980s when I was training to teach. One of my lecturers planted the idea that I might like to do my block placement in a local school with a reputation for being ‘difficult’; if i could manage that, he said, I could handle anything. I liked the idea so (to my peer group’s surprise) I requested the school. What I discovered through this was that I could cope with the challenge thanks to the tremendous support I received from staff. Later I would reflect that if such collegiality and support were important to me, organisations judged ‘satisfactory’ (especially schools which were coasting) might be best avoided.

While I wouldn’t want to suggest a direct comparison between schools and residential homes, what these reflections reminded me of was the need not to write-off an organisation too hastily. Is root and branch change required? I asked Dylan’s social worker when I’d reflected on the situation overnight. Or was it an isolated incident? Would whatever is wrong make Dylan directly vulnerable? And how long will it take to put right? A week? Six months? Or years?

Transforming risk

risky flight 005These questions matter because it will take months for me to start over; the process of identifying a provider, visiting, arranging assessments, submitting reports, getting the paperwork approved and planning for transition is time-consuming. Perhaps, I suggested to Dylan’s social worker, it would take as long to find an alternative as to wait while any issues were addressed? Especially as an alternative provider would almost certainly mean Dylan moving further away from home (something I had just lost my nerve about in relation to a previous provider). Perhaps you’d consider reinstating that placement? Dylan’s social worker suggested. My magical thinking, it seemed, was being magicked away.

Wouldn’t it better to work with the setting rather than walk away? I asked. And might it not be the case that a place is safest when a ‘problem’ has been identified? My questions reminded me of an incident years before, related not to social care or education but to air travel. It was 1987 and I was flying to Tel-Aviv with a boyfriend. Postgraduate students at the time, we had managed to save enough money from our grants and jobs to fund a trip to the Middle East. We had selected dates to fit in with our studies and the temperature but it had escaped our notice that we were travelling on the eve of Rosh Hashanah; we arrived at the airport to find our flight busy with people heading home for the holiday.

My boyfriend was not a seasoned traveller; this would be his first flight (apart from the plane he came to England on as a child) and he was nervous. Other people waiting for the flight that evening were nervous too; so nervous, in fact, that one of them identified my boyfriend to security police as ‘behaving suspiciously’. My boyfriend was pulled out of the Departure Lounge, along with two other passengers, and  interrogated for several hours (as the only link between the ‘suspects’ was skin colour we later reflected this was a more likely explanation than behaviour). At some point that evening I was also taken and questioned; I had no idea what was going on or why they had taken my boyfriend so didn’t realise their only interest in me was whether my answers would corroborate his (which they did).

As well as being a horrible experience the incident caused anxiety. When the ‘suspicious’ passengers were finally released and the plane cleared for boarding I was reluctant to travel. I had no idea what information they were acting on, I told one of the special officers, but if there was a threat to the plane then one thing I knew for sure was that they’d questioned the wrong man: my boyfriend was no terrorist. How exactly, I asked him, do you expect me to get on that plane now? Lady, he replied, this will be the safest plane out of Heathrow tonight. Every item of luggage in the Hold had, apparently, been checked: they were confident that there was no threat. This lesson has stayed with me; the identification of risk can sometimes create a place of safety. At least every metaphorical item of luggage in the care home’s Hold is being checked right now, I told myself.

Staying alive

risky flight 008So for now the move is off. I’m on pause. Holding on. I’m not sure whether I will wait or look for somewhere else for Dylan. What is clear though is that I need a break so that I can rest and restore my energy before the long haul. Because whatever happens, it will take a while…

I tell myself that at least Dylan doesn’t have to suffer the ups and downs of the journey but that isn’t true; he picks up on my anxiety I’m sure. So after a more settled period there have been a few incidents this week. One evening my daughter intervened to ensure my safety during a particularly challenging episode. Afterwards, in response to my description of the incident, a friend urged: there is a safeguarding issue here – you are a vulnerable adult. I had never considered this; that the concept of ‘safeguarding’ could be applied in my interests as well as Dylan’s. Should I report my situation to the Care Quality Commission perhaps? Tell them that I am concerned about my ability to deal adequately with challenging behaviour? That I am not sure I can ensure the safety of the adult in my care and of myself and daughter? Perhaps they could come and inspect me? Check the baggage in my Hold?

Social care in England is in crisis with a shortage of places for vulnerable adults and a lack of funding for the recruitment, training and retention of staff in those that exist. That creates risk. But it is also a risk to leave parents unsupported. I am relatively fortunate: I am fit, experienced and confident (mostly) when dealing with Dylan. But I am also weary and ageing. ‘We’re scared to die’ an acquaintance said to me recently, referring to he and his wife’s concern about leaving their adult son alone and unsupported. I recognised his anxiety and later in the week mentioned it to another adult carer. She nodded. Yes, she said. I am completely risk-averse now. I need to stay alive.


The photos were taken in 1987 on our return flight to London from Cairo. They include views of Cairo, the French Alps, Greece and Schipol airport. The journey was quiet and uneventful.