There seems to be an overwhelming desire in all areas of life, to make people with autism fit into a neuro-typical (NT) way of being. Apparently it’s better for us to be like NTs. It applies to how we are socialised, educated, and how as adults, we work. There is an all-pervading view, that autistic children must be exposed as much as possible, to the same levels of socialising as their NT peers, to make them like it and get used to it – and because “it’s good for them”. NT parents don’t always realise, that doing this won’t necessarily help their child and can actually cause much unhappiness and discomfort. Most parents are only trying to do what they believe is best, but an NT parent can in some cases struggle to be in tune with their child in the way they need. Sometimes of course, they are working from bad advice from professionals too. I read on an autism forum, how a parent (who is themselves on the spectrum) tried to expose their autistic daughter to as many sleepovers and socialising events as possible when she was younger and how once the daughter reached young adulthood, it hadn’t done her daughter any favours. Because as an ASC female she had good masking skills which may have been further honed by her typical life experiences, to the point that she could pass as NT, but suffered internally because she still has the same autistic experience as a person on the spectrum who isn’t good at masking their condition – yet feels pressured to hide her true self.
Many autistic children, having experienced a full day at school, are exhausted and want quiet time, to be alone or to find their own ways to de-stress. Insisting on putting that child in after school clubs, visiting friends/having friends or relatives round, or going to activities after school, or having sleepovers can overwhelm the child. Don’t forget they will have been interacting and socialising all day at school, the very thing that is challenging and tiring for them, so it’s perfectly fine if they don’t want to do yet more. Not all children on the spectrum act out their distress either, the passive autistic can internalise it and end up depressed and self-harming as a way of dealing with their internal state. They will have endured sensory input all day and are being asked to endure yet more. An autistic person’s ears can actually feel more sensitive by the evening, be less tolerant of sound, as if they have reached their input limit and need a rest.
Being high-functioning and having good masking skills (as I have posted on my blog before) is actually a curse in many ways. Because not only does society pressure you to fit in and be “normal” but you pressure yourself too because your intelligence allows you to notice your differences and that level of self-awareness brings inhibitions. It’s not something you want to do – to go round explaining to all and sundry “Actually I am autistic, so sorry if I don’t act the same way you do, or do anything you might consider odd, just so you know.” to let yourself off the hook to be yourself. It’s a hard thing to deny your whole being, by acting in a certain way.
Some children and adults with ASC retreat to their room and are content to just sit on the computer for instance, or pursue a special interest alone. Parents especially, can worry about this and think they must encourage the individual out of their room to participate more in the world. But sometimes, that is enough for that individual at that time. Quiet and solitary activities are often the autistic person’s way of sorting out the jumble in their head from their day, and strengthening themselves to carry on for the next one. It’s valuable time for us. Many of us live in a very internal world, and solitary activities can allow the space to think through events of the day and make sense of them. Some spectrumites want to socialise and are upset at their difficulties it’s true, but not all. It’s wise to ask the person what they want, and if they make it clear they are struggling, then offer support on their terms. Don’t feel it’s OK to make them like NT peers and force them into things they just don’t want. Some people on the spectrum are at risk of becoming isolated if they are not supported and encouraged, but that’s a different thing than making someone do things just because it’s your view of what is normal.
I was not diagnosed until I was an adult, I went to mainstream school and was made to do all the things my peers did. It did not change my coping abilities or limits, whatsoever. I still struggle in communication, I still often prefer to be indoors alone, I go out and do things on my own terms and usually only when I feel I’ve had enough days indoors, being quiet. If I start trying to fit too many things in, or pressure myself to keep up with everyone else, I quickly become exhausted and need days to recover afterwards, so it’s counter-productive.
Teaching socialising skills is a positive thing, it is known that early interaction is very beneficial to autistic children, but that still doesn’t mean that the individual will have the desire to interact to the same level as NT peers. Sometimes, you need to let someone just “be”. Listen to the quiet voice of what they are telling you. It’s better to help provide the skills the person needs, but also understand they have a choice and can be very instinctive about what their own needs are. Meltdowns are a child’s (or adult’s) way of communicating that they are in a situation that is too much for them or they have reached their limits. So do listen to those meltdowns. Perhaps it’s not that you are doing the wrong things for that child, but that you are just going about them the wrong way.
Mainstream schools sadly, educate autistic children in a way that means making them comply as much as possible to NT styles. It doesn’t necessarily work for autistic children. It’s not about making children on the spectrum “fit for society”, it’s time adjustments were made in society to allow autistics to be accepted on their own terms. We are at least 1% of the population and rising. In the US autism rates are now 1 in 50 and the UK rates are likely higher than is officially recorded because the NHS is very slow to diagnose females and seems to have set the bar too high, as in many cases they are failing to diagnose people (citing “autistic traits but not enough for a diagnosis”). So as such a large minority, ought society not be adapting to us? They put wheelchair ramps and disabled toilets in for physically disabled people, induction loops for the deaf and crossings have textured paving for the blind and partially sighted. What about us? It’s discriminatory to believe that an invisible disability is less deserving of accommodations and the law says we are entitled to them in many instances – but we need it across the board.
I have just returned from taking my eldest daughter to a medical appointment. I told them she was autistic and they could see she was anxious. When she had to have x-rays she started asking a lot of questions, clearly needing reassurance – which I was giving her, but the radiologist started getting snappy and saying “well I’m not going to force anyone and I have someone else to see” instead of recognising that she just needed to answer a series of questions my daughter needed to ask, to be reassured. Where was that small accommodation? She clearly didn’t understand autism and expected my daughter to be like an NT child and attributed her need for reassurance to her not being prepared to undergo the x-rays – in which case she wouldn’t bother.
I want to be me. I don’t want to be a cultivated and exhausting version of me that suits everyone else. I don’t want to be something I’m not and fear judgment and derision by society for being different. That’s what all autistic people want. We don’t want to hide behind a mask. We will always be square pegs, so start making some square holes for us because as you can see from the picture above, when you force a square peg into a round hole, we end up broken.
(And just imagine, if rates of autism keep growing, NTs could end up in the minority – and who will be asking for adjustments then?)
Thought for the day: