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.
