Poignancy and “Self Acceptance” by @autiepower #ThisIsAutism

By | April 16, 2014

Today has been a day in which both T and D have done Hubbie and I proud. It’s been a day spent with Hubbie’s dad, a day which he (FIL) wasn’t looking forward to as it was the birthday of his late wife, Hubbie’s mum. The first birthday without her. His birthday had been the week before, another first. A poignant start to April.

I had gently impressed on T and D the fact that grandad might get upset but we were going there to cheer him up and – hopefully – make him smile.

And we did. T and D behaved really really well.

Unfortunately once we’d left, T became extremely agitated. D had said as we were leaving “I don’t want to go” and T interpreted that to mean that she hadn’t wanted to visit in the first place, when she meant that she hadn’t wanted to leave. There followed a tirade from T about showing some respect. Picture the scene…a furious T, an upset D and a referee (me). However much I tried to explain to T what D had meant, he wouldn’t accept it and there followed an absolutely stony silence.

I guess that T had built up a few emotions during our visit, he (I guess) hadn’t wanted to leave either and he definitely, definitely did not want to admit that his assumption had been incorrect.

This aspect of T’s character really concerns me with the onset of secondary school in September. His refusal to accept and negotiate is part of what drives him, what makes him so good at his school work and sport but there will be far, far more pupils around, some of whom might not take kindly to a T-tirade. One of the reasons we’re appealing his school place to (fingers crossed) obtain a place at our first choice, a smaller school with a good community spirit.

Fortunately for D, T has headed off with Hubbie to a men’s team football match tonight, a chance for him to watch the game and get some ball play in too, one of his calming mechanisms.

Still, I’m very pleased that they both made their grandad smile and kept emotions under control whilst we were with him.

This Is Autism

Tonight’s guest post is from Anya who is @autiepower on twitter. It’s a great post detailing how she felt before her diagnosis and just how far she’s come since.

Self Acceptance

” “I think she is spending too much time with adults”. That was my pre-school teacher’s theory as to why I was struggling socially. I refused to play with the other children during break times. I didn’t understand the concept of ‘playing’ and had very little interest in it. The other children baffled and frightened me and I had no desire to be around them. I was echolalic (I still am to a degree) and no-one understood why.

Beyond pre-school, things weren’t much better. At primary school I would use any excuse to avoid going outside at break times. The other children thought I was weird and wanted little to do with me. I struggled to integrate into the others’ games and preferred to play with the chess set indoors alone. When the other children did interact me it was to mock and bully me, or to tell me that whatever I was doing was wrong.

Things deteriorated further when two of my teachers decided to bully me too. I frequently got into trouble for being sarcastic, talking back and swearing. I didn’t mean to offend, I just didn’t understand the social hierarchy and this, combined with my still present tendency to echo or emulate the words and behaviours I witnessed, got me into a lot of trouble. I started to become frequently upset and very withdrawn. I saw little point in anything. Two of my teachers took advantage of this, belittling and mocking me in front of my peers, which gave my peers licence to treat me even more badly.

I still struggled to socialise and communicate, despite having quite an advanced vocabulary for my age. I achieved good grades at school in everything apart from Physical Education (I’m monocular and dyspraxic), so all my difficulties were put down to nothing other than bad behaviour. “You’re intelligent, so there’s no excuse” was a refrain from both parents and teachers. My sensory issues meant I was often in discomfort or even pain from my clothing. I had almost constant constipation and bowel pain, but other than yelling at me, my parents did nothing. The noise of the other children was so overwhelming and could make me feel dizzy, disorientated and nauseated. The texture of the craft items we used in school made me gag and the fluorescent lighting gave me frequent headaches. When I complained of these problems, I was just branded “fussy” and “spoilt”.

At home, my preferred activities were reading, practising the flute and listening to music obsessively, often the same track tens of times in a row, much to the annoyance of my parents. My mother frequently physically forced me to go outside and ‘play’ with the other children on my street. I would cycle round the block once and ask if I could come in. I would be told “no”. This process would be repeated until eventually my mother caved in and let me return back to my beloved books.

What people didn’t know is that I wasn’t having an easy time of it at home either. My mother was very violent, beating me with planks of wood and shoes as well as her bare hands. I would also be lectured for hours on end about how bad I was and was often punished for infractions such as not being talkative enough. My mother may not have known the word “autism” but she know damn-well that I was different and seemed to genuinely believe that she could beat me normal.

In the year leading up to my transition to secondary school, things really deteriorated for me. I was becoming aware of just how different I was and how difficult I found it to interact with and understand other people at all, especially my peers. I felt like I was an alien and somehow ‘other’, and was baffled by the culture I was supposedly a part of. As if that wasn’t enough to contend with, my mother’s abuse of me was getting worse. I developed anorexia and started self-harming.

Secondary school was a disaster from day one. I was bullied the moment I walked into my new classroom and this continued until the day I left. My refuge was the music department. I found, for the first time ever, a sense of community and belonging. Don’t get me wrong, I was still very much considered “the weird one”, but somehow I was accepted too and this helped make up for the rejection I faced elsewhere.

Outside of school, my life was a blur of studying, abuse and my father having one girlfriend after another. Music was the one thing that kept me sane. It was an outlet for my stress. The downside is that I had learned bad habits from my mother. If I made a mistake when practising the flute, I would punch my thighs as hard as I could, or throw myself against the wall. I had never experienced acceptance or forgiveness from my mother for my mistakes, so I had never learned the skill of self-forgiveness. Errors had to be punished, that was all I knew.

I moved to live with my father just before starting my A-Levels and shortly afterwards I had a mental breakdown and also developed M.E. I barely passed my A-levels, not helped by my father’s verbal and psychological bullying of me. I couldn’t face going to university right away and knew that I would just have to go to the local university and commute from home. The degree of my limitations was finally beginning to hit home and I knew there was no way I could move away and live with strangers, it would literally have killed me.

After a couple of years spend recovering and doing a basic temp job, I finally made it to the local university to study Music. I barely spoke to anyone for the first year, I just couldn’t do it. Finally, on the first really sunny day of the year, I managed to force out some words to a fellow student sitting next to me. I asked if she wanted to go for a coffee. She said “yes” and we’re still friends to this day.

Despite doing reasonably well at university, and making a good and valued friend, I was struggling with day to day life. I couldn’t cope with basic everyday matters or independent living skills and my mental health was deteriorating. I was diagnosed with depression, generalised anxiety disorder, M.E. and obsessive compulsive disorder. I was prescribed the obligatory antidepressants and also some beta blockers, but still I struggled. I knew I was heading for another breakdown.

At the end of my tether, I went to the local branch of MIND. The lady there agreed to see me even though I got lost and was nearly an hour late. Due to my difficulties with boundaries, appropriateness and impulsivity, I had no qualms in blurting out my entire life story to this poor woman. She was kind and just listened. She then left the room briefly and returned with an information leaflet about the autism spectrum. I read it and it described me so well that it was almost frightening. Finally my life started to make sense and I realised for the first time that I wasn’t intrinsically bad and that my difficulties weren’t all my fault.

From there I got in contact with a local autism charity who helped me get an appointment with a local consultant psychiatrist. The psychiatrist put up a fight against referring me for diagnosis, but my delightfully forthright advocate soon got the referral made.

I remember a psychologist once told me, half-jokingly, that he thought he could tell whether a patient was on the autism spectrum from the short walk with them from the waiting room to his consulting room. In an effort to help out the professionals on the local autism diagnostic team, I had produced a 49 page document describing how my traits matched up against various sets of diagnostic criteria. To this day I wonder whether that was the team’s first clue that I might be autistic…

With my partner, advocate and armed with information about my early years from my Grandmother, we entered the consulting room and were greeted by a Consultant Psychiatrist, Speech and Language Therapist and DISCO trained psychologist. They said that my notes (all 49 pages of them!) were helpful. I was asked about my early childhood, my difficulties with communication and social interaction.

I then went into a separate room with the Speech and Language Therapist. She showed me some images and asked me to say what the people in the images were doing and how they might feel. I struggled with this task but did my best.

After nearly three hours of questions, we left the autism team to deliberate. The soon summoned us back into the consulting room and told me that they were quite certain that I was on the autism spectrum.

I had mixed feelings. Part of me was relieved, as finally I had expert opinions to say that my difficulties weren’t my fault and didn’t mean that I was innately bad. I was excited to tell the other auties and aspies I’d met through the local autism organisation that I was now officially one of them. I was keen to get online and sign up to autism forums on which I had only felt able to lurk previously.

However, I did feel some unexpected sadness. I think it was because I finally realised that my difficulties weren’t going to go away. I would always be the ‘weird’ one, the one who didn’t fit in, alone. There was no magic solution that would make my life easier or make the world better able to understand me.

Today, I am proud to be autistic, largely as a result or support from a local autism organisation, involvement in the online autism community and discovery of the autistic rights and pride movement. I am able to work, albeit with the aid of a support worker from the government’s Access to Work scheme, I am engaged and I live in my own flat and get support with day to day matters and life skills from my advocate, support worker and my friends.

So, was getting diagnosed in my 20s worth it? Definitely. I now have a better understanding of myself, have embraced the Social Model of Disability and the disability rights movement and feel confident asking for what I need. I no longer think of myself as bad or wrong. I have finally achieved self-acceptance.”

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Facebook Comments

4 Comments

disqus_dlaTZXJpfW on 16th April 2014 at 8:59 pm.

Wow! Fantastic post, thanks for doing this AutismMumma.

Reply

Jeannette on 17th April 2014 at 2:36 pm.

You’re very welcome, thank you for reading and commenting 🙂

Reply

rebecca beesley on 1st May 2014 at 1:41 pm.

Secondary school is a big worry for us too. What a powerful and poignant guest post. So sorry to hear about all those difficulties growing up and glad that diagnosis brought about some answers. xxx

Reply

Jeannette on 11th May 2014 at 3:13 pm.

Me too, I’m so glad that autiepower came through what must have been a very challenging time.

Reply

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