Learning is emotional

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My last supervision was fantastic. Both supervisors were there. I was questioned intently; I gave firm, concise answers. I asked for clarification on questions I didn’t understand, or where meanings weren’t clear to me.  I stated my position with passion and conviction. They were happy – ‘excited’ – by how my project is developing.

Because. I had prepared well, and gone in ready to defend every point. I remembered to speak loudly and clearly. I remembered the words I’d chosen. I remembered to justify.

I felt good. I felt – ecstatic! I felt like I belonged.

My last meeting was – hideous. Eight (?) people in the room. A research group. Some of whom I’d met before. Introductions were made; areas of interest covered. A brief presentation – informative and engaging. We were then split into two groups for discussions. I couldn’t hear. I couldn’t interpret. I was asked questions – I couldn’t answer. I was asked about my previous research – I couldn’t answer.

But. There were not just two group conversations, but conversations within conversations. I couldn’t filter; I couldn’t isolate the one voice I was supposed to be listening to. The questions were vague not explicit (which fact do they want me to say?); the debate open and overwhelming; the expectations – unknown. My anxiety levels – already high as a first-time contributor to the group – rose and the pain in my ears from the blare, the blare of all the voices – rose.

I felt trapped. I felt confused. I felt exposed.

I felt like I didn’t belong. I. Did not. Belong.

These two events happened on the same day. Same person. Same subject. Competent and articulate in the first; hesitant and unconvincing in the second. Functioning well v functioning badly. In the same institution. My argument against functioning labels summed up in one day (Romana Tate wrote a great post a while ago on the implied differences between high and low functioning autism).

What was the impact? The first felt like I’d made progress; I was energised. The second like I was back at school; lost; stupid. The parallels between what I’m feeling at University, and the area that I’m researching are not lost on me.

How do our girls feel, from one lesson to the next; from one teacher to the next?

Which had the biggest impact? Without a doubt, the second. These people are kind and generous, and yet I came away feeling like I was not good enough, that I just didn’t fit in. I was yet again pulling away to the fringes, wanting to disappear, wanting to shutdown.

Which I did, after a week of sinking. I blamed myself instead of what my professional mentor calls the ‘hostile environment’. My autism and anxiety and sensory processing difficulties combined to overwhelm and impair my thinking, in a situation that involved newness and multiple inputs. Do our girls have similar experiences?

I came away frustrated and upset that I had not been able to function in that scenario, in that world. In that world where I knew my subject, where the people wanted me to be involved, where I was not ignored. How worse must it feel in school if any or all of those do not hold true? In lessons that make no sense; with teachers who do not believe a diagnosis; with peers who do not wish you well? How much harder is it to try to fit in? How much harder when you can’t?

I have been reminded that I don’t have to try to ‘fit in’ to that world as it is. That, actually, I can ask for adjustments to be made to enable me to participate. As an advocate for our #actuallyautistic girls I know this, yet I wasn’t able to advocate for myself at the time, and the feelings of failure and sadness stayed with me. Yesterday I had to stop working and take some time out to look after my mental health. I could choose to stop working. I could choose self-care.

What do our girls choose?

 

#lovelearning #inclusion

 

Procrastination?

Really tricky week.

I’m in my ‘second term’ of my first year, punctuated by the Christmas break. In my mind that means I’m halfway through my first year and, whilst this is not strictly true, I look at all the things on my broad plan that I need to do this year and I feel lost.

I am feeling extraordinarily anxious.

Result?

My brain shuts down. Fight, flight or freeze engages. I can’t think clearly. I can’t think.

My difficulties with sensory processing are exacerbated.  I can’t filter sounds. I’m meeting a colleague for lunch and we wander around the pub trying to find a spot that I can bear to sit in. In the end I pretend. I can’t bear to be touched. I can’t stand artificial lights. The instinct to shutdown is immense.

My capacity to be with other people, even people I know care about me, is impaired. I can’t process the words; I can’t interpret the intentions. It is exhausting.

I am jangly. I need to stim, to soothe. I rock discreetly. I roll the edges of my scarf, over and back, over and back. My fingers move through their routine, the synchronised pattern of movements they’ve followed since childhood, cycle after cycle.

Result?

I’m supposed to be starting my literature review but I can’t seem to read. The words don’t go in. The amount I have to read is overwhelming. The words don’t go in.

I can’t seem to string a sentence together, which is tricky since my Supervisors are wanting a draft of a section of my review. I have no words.

Result?

I feel like a failure, an imposter. I believe people must think I’m lazy, or not putting in the hours. Not working hard enough. Procrastinating. I believe.

I can’t do nothing so I just do something. I decide to spend a day learning how to use Scrivener properly. I go to the library and find a framework I can use to help me read critically, rather than word-by-word. I find a template that allows me to input the aims of my research, and chart my progress in answering my substantive aims through the literature.

I revisit my plan. I haven’t done any writing. Am I a failure? Am I procrastinating?

I am doing. I am creating structure. I am finding order. I am managing my anxiety. I am doing.

 

 

Why help doesn’t always mean support

It’s been over two months since my last blog.

I don’t think it’s supposed to work like this?!

So I’m going to change. I’m going to commit to write a blog every week. Not long. Not clever. Just a log of what I’ve been doing. Just a blog.

And to give me some focus I’m going to write as though I’m speaking to my Dad. Who is also probably autistic, certainly super-bright. And who has dementia. These are the words I wish I could share with him. A conversation with my Dad.

I’m going to start by backtracking to my first week back at University after Christmas, so I’ll have a record of the year. Bear with me, I’ll catch up.

My task this week was to put together a plan for my PhD. Specifically, a Gantt chart. Yes, I had already written a schedule of work, detailing things to do term by term, and subdivided into three areas: research, writing and development. And I had no idea what a Gantt chart was, or how to do one.

Well, I googled it. In essence it’s a spreadsheet to schedule activities. Sounds fine, but have you ever tried to schedule all your tasks for the next three years? Where do you start? I had so many questions I wanted to answer before I could start this task. It’s interesting that I feel the task doesn’t start until the thinking is done, which may explain why the thinking stage is so filled with panic and anxiety for me (think quicker, must think quicker, must finish thinking and get started!)

Questions like how do I compile a comprehensive task list? How do I know I’ve not missed anything out? How do you work out how long each task will take before you’ve done it? My brain was overwhelmed before I began, it felt like the top of my head was literally frying.

It hadn’t helped that a professional assigned to support me told me the trouble with my ‘all tabs open’ brain was basically because I lacked discipline. Yes, that was the same meeting when he asked me if I was going to have a meltdown, because ‘people with autism do that’. When he told me I had so many issues he didn’t know where to start – seriously!!It was actually the only meeting I had with him, as I refused to see him again. I came out feeling like I’d had one of my worst days at school, all over again. I came out feeling stung and angry and inadequate and less-than. Not better than before, but damaged.

It was a striking reminder of how tough it can be every day for some autistic girls, struggling to manage in mainstream schools.

Fortunately, I am now in a different place.  I know my rights. I know how to take action. I now have a brilliant Professional Mentor from the University supporting me instead. Who talked me through the Gantt chart nightmare. Who gave me strategies. Who didn’t make me feel stupid. Who made me feel I belonged.

It leaves me wondering, how do our girls respond when they are struggling to see school, the whole of school, as a safe place to be? What are their options? What do they do?

 

 

 

 

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.

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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

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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.

Worth It?

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Every now and again I get asked whether being assessed for autism as an adult is ‘worth it’.  This time it was by my physio, who I’d met just once before.

A strange question in any other scenario.  ‘Was it worth getting assessed for that broken wrist?’ ‘Was it worth getting assessed for that lump, you know, the one that turned out to be cancer?’ Of course it was worth it.  But for autism?  The very question suggests the questioner doesn’t believe so; perhaps already doesn’t believe the diagnosis.

Now, I am an autistic adult who was diagnosed just a few years ago.  Post qualifying as a teacher. Post travelling around the world. Post marrying the most wonderful man. Post becoming a mum (twice).  Which makes me successful, right?  Absolutely. No. Need. For an assessment.

Except that’s only part of my story. Also behind me are the spectacularly failed A levels. That battle with my weight.  Several failed engagements.  A rather unusual employment history.  Plus all the things I struggled to keep hidden. Being bullied at school and later, by a bullying boss. Several abusive relationships. The countless times I put myself in positions of great vulnerability. And didn’t always escape unscathed. The exhaustion of clinical levels of anxiety. The falls into chasms of depression.

My diagnosis gave me, finally, all the things that I had struggled with for so many years. Self-knowledge. Self-esteem. Self-identity. The confidence to celebrate and embrace my differentness. Me. Making sense of who I am has been a gift.

But I’m also still autistic. I still struggle to communicate the thoughts and words that whirl inside my head. I still panic when I have to go out – to meetings, to events, to the park. Ensuring the kids have a clean polo shirt in their wardrobe each morning, and that there’s bread and milk in the house at the same time still stretches my organisational powers beyond their limit. My inability to filter sounds is still a handicap when there’s more than one sound in the house (always).

Which is why I was pleased and yet surprised that I was invited to meet with a Disabled Students Advisor at the University last week.  I was sceptical.  After all, I was about to start studying for a PhD.  How much help would they think I actually needed? Would they think I was wasting their time?  Would it be ‘worth it’, to have even just a quick chat with me?  Would they just laugh in my face?

Surprisingly – not. We talked about how my autism might impact my ability to succeed as a student. We talked about the difficulties I had studying for my B.Ed, and how I was finally taught how to revise and sit for exams (shudders). How, as a Masters student, I lay all my notes all over the floor so that I could see all the information as a whole picture, and hold that in my head to write my assignments.  And how that didn’t work for my dissertation (my floors just aren’t that big). How studying as a single, childless autistic student means you can take all day settling your mind to the task, then hyperfocus for as long as it takes to get the job done – without small people demanding dinner and bedtime stories, reassurance through the night, clean clothes and yet more food in the morning. And how organisation, scheduling and  planning are all beautiful things for which I strive, but struggle daily to achieve.

At the end of this (and more) my Advisor suggested I would benefit from a Professional mentor to help me reduce the impact of my Executive Function impairments. She suggested some software that would help me capture my thoughts and ideas.  She accompanied me to Student Services to reduce my anxiety – helped me clarify my calendar, and resolve issues around fees.  She countered my impulsivity by creating space for options to be explained and explored.

What do I notice?  My brain no longer feels on the verge of shutdown. Questions are answered.  Concerns are addressed. I feel less anxious. I feel supported. I feel like I have my husband standing next to me, interpreting. Wow.

This is why yes, it is most definitely worth it. For me, right now, my diagnosis is making a difference to my life. It has improved my marriage, my parenting, my work, and now, already, my time as a student.

It continues to be a gift.

And I’m left wondering how different my life would have been if I had been given this gift as a child, instead of growing up behind a mask.

 

 

 

 

Why Now?

mum2aspergirl

Welcome to my blog!

I’m mum to an amazing Aspie-girl and NT boy-comedian, and married to the most patient man in the world. Fortunately.

My daughter was diagnosed with Asperger Syndrome six years ago, thanks to a referral by a Health Visitor at the age of five.  A whole five years after we realised that our little whirlwind was not your average child.  Like not sleeping.  Needing things to be the same.  And not being soothed by hugs and cuddles.  Plus a hundred and one other quirks that we now recognise as part of her autism, or connected to it.

Three years ago I was also assessed for autism, having previously sat through my daughter’s assessment mentally ticking off traits for both of us, and was also diagnosed with Asperger Syndrome.  And ‘mild’ ADHD Inattentive type.

We live near London in a house with a metaphorical drawbridge.  My husband and son are happy with my preference for an introverted lifestyle; daughter not so much.  She’s the extrovert Aspie.  Weekends can be a literal tug-of-war.

I’m a primary teacher by profession, and have worked as an autism Parenting Practitioner for a fantastic Berkshire charity since 2012.  I have a particular interest in the education of autistic girls in mainstream education, and am going back to University very soon to begin my PhD.

This blog aims to chart the progress of my research, and thoughts along the way, as well as keep track of my daughter’s experiences as she looks towards secondary school.  Plus my experiences as an #actuallyautistic mature student.  Eeek.