20 Jul 2014

Understanding autism

Autism is difficult to understand. It is difficult for someone with normal brain function to fathom that someone's brain can be wired wrong, and yet still work. The brain is unfathomable to many, and the idea that neurological connections can go wrong but still create a working person is even more abstruse. Therefore, the idea that someone who looks normal, but has a messed up brain is difficult to swallow. The invisibility of autism is the root of most people's issue with it.

And HOW people take issue with it! There are plenty of folk who believe it is caused solely by bad parenting, linking it up with ADHD because it starts with the same letter and seems to affect children more than adults. There are plenty of folk who simply don't believe it exists, and that it's an excuse, a label to gain children special treatment. The idea that the only type of autism is the Rain Man stereotype is endemic.
The idea that autism occurs on a spectrum fuels the assumption that it cannot be real. The fact that most medical conditions exist on a spectrum passes most people by. Cancer manifestations can range from immediately deadly to an inconvenience. Even something as humdrum as hypertension occurs on a spectrum ranging from barely elevated to life threatening.

Then there is the debate of the causes of autism. The current best theory is that it is genetic. Some argue it is passed down the paternal line, but that may be because there is a higher percentage of male autists than female. However, other theories include the (somehow immortal, though wholly discredited) immunisation cause, and a variety of Daily Mail-esque causes related to maternal intake of Substance X in pregnancy. So, if you have a family member with autism, it can be difficult to accept there may be a genetic link. I don't know whether this guilt-denial is the same in other genetic conditions, like the breast cancer gene, or whether it's restricted to birth-onset neurological problems.

There is as much difference between autistic children as in any children. I personally know six autistic children other than my son Jimmy, and every single one presents differently. My son and godson are similar ages, both with ASD diagnoses and are completely different. The other autistic child in Jimmy's class is totally different again. The common threads of diagnosis are difficulty with social communication, difficulty with social interaction, and difficulty with social imagination. For Jimmy, this means that he struggles with normal conversation, turn taking, sharing, friends, playing, concentrating on things that don't directly interest him, and engages in risky behaviour because he simply cannot fathom danger. He won't look at you when you're talking to him most of the time, and very rarely makes eye contact. His emotional palette is very limited, and he doesn't recognise emotions in other people. He cannot grasp what other people think, or what behaviour is unacceptable. His lack of concentration holds him back at school, although his intelligence and ability to understand quite complicated concepts is exceptional. He has a small collection of people that he actually treats as people, and everyone else might as well be a plank of wood for all he cares. Some autistic children have a mix up in their wiring that means they process faces/people as objects, and that is very much Jimmy's thing. He also has some pronounced sensory problems, mainly with sound and proprioception (although autistic children can struggle with any combination, or all of their senses) and his main way of dealing with the resulting overload is to fight, to scream, or simply to withdraw. Jimmy falls on the aspergers end of the spectrum, which basically means his language problems are limited. Many autistic children either never speak, or take years to learn. Jimmy copies language all the time, but he is able to speak fluently and spontaneously. When he is mid-meltdown, he loses proper language, and become single-word-repetitive. Today, it was the happy word of diarrhoea, bellowed repeatedly, for some time. I'm sorry, neighbours. His social level is far lower than his brother's, and his brother is twenty five months younger.
There is a link between autism and ability to manufacture melatonin, which means many autistic children cannot fall asleep and stay asleep. Alas, this is very much Jimmy's thing as well.

This is just what he does: any other autistic child may do something completely different.

If you took each of his odd behaviours as a single entity, they could be explained away. Every child does something a bit odd that falls on the spectrum. But the collection of behaviours together is what leads you to the diagnosis of autism. It's not a diagnosis paediatricians make lightly, because in making it you are saying "this child will have social problems for the rest of their life". It is admitting the child is disabled. The idea that you can simply present your misbehaving child to a paediatrician, get an autism diagnosis and then live without guilt, or need for discipline for the rest of your child's education is a total misconception, but very popular in people who don't want to know more.

I was relieved when Jimmy was diagnosed. Not because I want him to be autistic, but because it meant there was a reason for the way he was behaving. I have felt since he was a baby that there is something wrong with him, and I finally got validation for those feelings after almost five years of being sidelined and ignored. But the reality is that he is significantly disabled by being autistic, and I have to be his advocate in everything. This is another thing that is generally overlooked by the Autism Is Not A Thing brigade - it is really hard work to be the resident parent of an autistic child.
There are lots of meetings where you're told what your child has been doing wrong, and it's your job to try and guess what insignificant thing has been the trigger, so you can avoid it again. There are meetings where you sit with clinicians and are told "this is what he's doing that isn't normal", and meetings where you sit with your child's headteacher because they want to exclude him for behaviour he can't control. There are meetings where you have to essentially put yourself in their shoes, and then walk around an area so you can spot things that might set them off, and then work out avoidance techniques, because there is no way the child has the self-awareness to do it themselves. I spent an hour and a half at Jimmy's school last week, looking at his new classroom, meeting his new teacher, meeting his new SENCo and trying to explain him, and even that wasn't time enough to give them all the information that might help. Then there's the strain on your personal life, the lack of time spent with your partner because your child needs almost constant supervision until he eventually goes to sleep around 9pm. The lack of spontaneous days out, when every potential venue has to be scouted for likely triggers. The general isolation of not being able to go out and see friends or family without weighing up the likely cost in terms of his sensory overload, because there's always a payoff in the evening, with the extended bedtime and the screaming. The worries about major events like weddings, wondering if he's going to be so uncontrollable that he'll ruin it. Trying to balance out his needs with the needs of his neurotypical brother without doing either of them a disservice. It's difficult sometimes to find the positives, especially after a bad week.

It's a constant, steep learning curve. So forgive me if I get annoyed when people tell me there's nothing wrong with my child, he just has a 'few problems' because the reality is somewhat harder, and more complex than that. It is a difficult condition to get your head round, and it is a complicated condition with many variables and an unclear aetiology, but finding out about it can only benefit you if you've got autistic people in your life.

If you'd like to know more about autism from a more objective point of view, I recommend the National Autistic Society's full and informative website.

10 Jul 2014


So, about six weeks ago, I sat some exams. And today, 8 days early, I got the results.

Hem hem.

For SK277 Human Biology, I got a PASS TWO.

And for A218 History of Medicine, I got...wait for it...


I'm still BUZZING over that. I sat that exam in such a woozy haze of infection, I honestly thought I'd be lucky to scrape a pass.

So, I've finished level 2 completely now. I got a first, 2:1 and 2:1, so hopefully I might get an alright degree classification when I get that far.

For my next trick, I'm doing two modules together again. One is a 30 credit level one called SDK125: Introducing Health Science, A Case Study Approach. This is a free choice module, that I'm doing partly because I need that many credits, and partly because health practice is where I'm from and I'm looking forward to doing more of that sort of work.

My BIG module is K311: Promoting Public Health: Skills, Perspectives and Practice. That's a 60 credit level 3, with an EMA at the end. I really didn't want to do two exams together again. When I was working, I did a lot of public health type work. Not specifically in that domain, but general health surveillance, and trying to encourage people to come for health checks, and vaccinations, and finding out why people didn't come in. Public health is something I have an increasing interest in, and I'm really excited to learn more. Although I suspect I will end up ruing the day I thought it was a good idea.

BUT FIRST I'm getting married on 8th August, so I'll be someone's wife again by then. Eeek.

8 Jul 2014

The Library As A Lifeline

My love of books is no secret. I learned to read when I was 2, and never stopped. I remember in year 4 being made to read the first line of every reading book they had to try and find something I couldn't easily read, and stopping at a year 6 book. I read every children's book in the house, and then moved on to my mum's books. I read the backs of cereal packets eating breakfast, and shampoo bottles in the bath. The idea of nothing to read still distresses me. I'm currently on bedrest with concussion and am not allowed to read much. I am so fed up.

We had very little spare money when I was growing up. I have six siblings, and with the mortgage and bills, we cost more than my parents earned. There was no spare cash for books. I used the school library constantly once I started high school. When I left, I began using the town library every week. I would go with my sister in her pushchair and fill the bottom of the pushchair with books.

I had a difficult few years in my mid teens. I was bullied, lonely, poor and bored. I babysat my sister as a job during the week and spent the money I got on visiting my boyfriend at weekends. My friends were still in sixth form. I didn't really belong anywhere. The books I got from the library were travel books; reading them sent me somewhere that wasn't a dead-end Lincolnshire town, where I was miserable.

And that is the value of libraries that is too often ignored by politicians and councillors trying to make cuts where privileged people won't notice. A book is a mental passport away from a situation. A book can provide the education needed to liberate oneself from inescapable difficulty. It can be a source of hope. Just the simple act of leaving the house to return books and fetch more can be a catalyst for independence.

I grew up in Lincolnshire and the way the library system is being systematically dismantled upsets me terribly. A library is far more than a simple repository of books. It can be a lifeline, and source of great pleasure for those who are less fortunate. The internet and Kindle have not removed the need for community libraries, and those who need them most are often the ones most excluded from the ebook revolution.

Save Lincolnshire libraries.