Into the Unknown

So last week we had to submit our application for a secondary school place for our daughter. Our bright, funny, bubbly daughter. Our terrified daughter.

Last Monday night, only the decision remained. A decision that had to be made by clear heads, but also by one small and precious heart. We had visited the three local mainstream secondary schools, last year and this year, in the evening and during the day. We had talked to the Heads and SENCO’s and the pupils. We had asked our questions. We had seen what we wanted to see.

The schools had their differences. One had a large intake; another very small. Two were a bus ride away; one was a walk. One school had an above average Progress 8 score; another was below average. Two were schools where she would definitely know other Y7 children on the first day; at the other we couldn’t be sure. There were also differences in uniform (her sensory needs mean there are certain styles of clothes she just can’t wear) and in sports facilities (she needs to move – a lot) and in the format of a typical day.

So far, so measurable. But what happens when your logical, rational daughter wants to make a decision based on emotion, based on fear? What happens when you and your partner can’t agree on which school seems to be – from the outside looking in – the best school for her? When you can’t agree – for the first time – on something this big?

Our conversations with the SENCO’s were notable. Partly the words they used; partly the support they said they could offer; partly how much they clearly knew (or didn’t) about autistic girls. At one school the SENCO talked about ‘ASD’ and ‘girls with autism’; my daughter would have a ‘social story’ (everyone who gets extra transition gets ‘the same one’); they’ll let her ‘get on with it’ because girls ‘cope’ in school. At another school the SENCO talked of the transition week (a ‘pioneer’ week) that was held for all Y6 pupils offered a place there, with extra days each half term for those who needed them; of the twice weekly check-in’s my daughter could have with a learning support assistant, to help with organisational skills and homework and anxiety. One school was definitely walking the inclusion talk; another school couldn’t even do the talk.

We know that the time between applying and finding out where she will be offered a place is going to be a time of great anxiety for her. Change is difficult. Knowing that things are going to change but not yet knowing how is awful. Not knowing is awful. The waiting is awful. How do you stop the fears and worries from building and growing, when there are so many, when you have to wait so long?

The four and a half months, waiting for an answer.

Then. The six months, waiting to begin.

There are some pretty simple changes that could be made to reduce this anxiety, which is not exclusive to autistic girls. Local authorities could reduce the waiting time between parents making an application and receiving an offer of a place. All secondary schools should begin transition plans much earlier for those children who are terrified of the unknown, provide a ‘pioneer week’, and give children multiple opportunities to build relationships with new people at secondary before they leave their primary school.

We were reminded of how well her current school knows our daughter; of how safe she feels there; of how supported she has been to get to this point where she is such a brilliant ‘her’. I phone the Head. She listens to my concerns, to the discussions we’ve already had. She doesn’t rush to answers, but builds in thinking time. She knows what won’t help my child, and what might. By the end of the call she already has the beginnings of a plan (now already in action).

Before we completed her application for a place, I came across an interesting study by McNerney, Hill and Pellicano on choosing a secondary school for an autistic young person. This was a multi-informant research project, which identified the things that parents, school professionals and young autistic people thought were important for a successful school placement. It was striking that whilst the children said how important their friendships were to them, this was commented on by only a few of the parents; a conclusion of the study was that children should have a bigger say in the decision.

20161111_120957-2

We listen to our daughter and her views every day. Why wouldn’t we listen to her voice in taking a decision that ultimately will affect her life the most? We pooled our information. My daughter made her choice. My husband and I made our choices. One of us agreed with her, so that was the school we chose. Are we all happy? No. But my daughter’s anxiety is no longer dominating her life and impacting on her ability to live it.

None of us can actually know which school is really the best choice for her; there is no one ‘truth’. But we can all support her and help her to make it work.

 

 

 

 

 

Autism is Not Like Cancer

20160502_120244-01-2

So in my last post I mentioned cancer.

I was trying to explore the idea of seeking clinical help for something with which I was struggling. To find answers. Not, for any moment, to suggest autism is like cancer.

The examples I used were of two other times I’ve been assessed by the NHS, over and above the time I was assessed for autism.  Once as a child with a swollen wrist and, post-autism diagnosis, once with a suspicious lump.  The wrist turned out to be broken.  The lump? Cancer. I was diagnosed almost two years ago, on the day I originally started contacting people in a search for funding for my PhD.

Now, people expect you to seek a clinical diagnosis for a physical issue such as these – something broken or lumpy, leaking or sore. Something that – without intervention – will not mend properly; will not ‘be as it should’. Might make you ill-er.  Might cause your death.

Neurological differences that no one can see? Not so much. Not unless they are causing someone else pain.

First of all, our society currently values conformity and uniformity of outcomes, and a lot of us (not all) #actuallyautistic females do our best to try to fit in with that, and with society’s expectations of how a woman should behave.  This can mean minimal observable behaviours (in public), which can make it very difficult for some people to comprehend that we could struggle with anything at all.  A teacher I interviewed as part of a research project said of an autistic girl in her class:

‘I just don’t see it. I don’t have to deal with anything’.

Suggesting that the support required by that particular autistic girl should be based on how the teacher was impacted; rather than the child.

Secondly, seeking a clinical diagnosis of autism puts you at risk of being aligned with the medical idea of ‘fixing’; with things ‘being as they should’; therefore needing a cure – which is certainly not my view. Or, as I read last week, at risk of needing a doctor to tell us who we are, rather than simply being able to self-affirm our autistic identity.  (Because most of us have already self-identified as autistic in order to be on that clinical pathway.)

And there has been a lot of discussion on social media recently about the validity or otherwise of self-diagnosis. Would self-diagnosis have been enough for me?  For me, at home, with my immediate family – yes, absolutely.  Outside the castle walls?  No, I doubt I would have ever raised my head above the parapet.  I would have kept my difference inside.

But a clinical assessment is not for everyone. Getting a formal diagnosis has historically been much harder for a woman, for a number of reasons.  And the outcome of an assessment is not always correct – they are subjective and dependent on the experience and knowledge of the Practitioners.  Appointments are not always readily available.  They are not always free. Yet self-diagnosis may be less widely accepted by society than a clinical diagnosis, and that perhaps is where the desire for a clinical diagnosis comes in; that wish to be ‘accepted’; to be ‘known’, in their language; on their terms.

For me, seeking a diagnosis was part of my route to understanding who I am. It has given me the confidence to stand up and say ‘this is me’. Part of healing the holes and tears that a lifetime of feeling different and ‘not enough’ had caused. Part of a pathway to psychological support for my mental health.  An enlightenment.  I know for sure that accepting and loving myself ‘just as I am’ made a huge difference to the way I approached and lived through my cancer treatment: straightforwardly, with openness and positivity.

I did not seek a cure for autism, but knowing and embracing my autistic self has improved the rest of my life – enormously.