This is a challenging post to write, but never one to shy away from speaking the truth, I decided to go ahead – and hope it would make people think – and not jump to defensiveness. Buzzing around in my head, were questions such as “will it offend people?” and “will it alienate people?” As an adult with Asperger’s, I have been only too aware of my differences over the years and the difficulties I have faced. Granted, I was not diagnosed as a child, so I existed without any of the supports that are available today for autistic children and it could be called into question whether I would have fared better with those supports – but I suspect not. I slipped under the radar – as do many Asperger’s females, people might have thought I was shy or a bit anxious, but no-one ever questioned me being “normal”. The majority of high-functioning adults of today, were not diagnosed as children, many are still undiagnosed, but we exist. Childhood supports or not, you can do nothing to undo the fact that you are autistic – and will always be autistic.
As an autistic adult using the virtual world of online forums, I have found that there is just as much (in fact probably more) risk of communication problems with others as there is in “real life”. I wondered if I was singularly argumentative; didn’t realise that my directness was viewed as just plain rude by others and I questioned myself. But this still didn’t explain it, bearing in mind that no matter how cross someone might make me online, I remain calm and collected and respond as professionally as possible. At times this seemed to inflame people even more, because they were losing their cool and I wasn’t. And what puzzled me even more, is that these were people already immersed in the world of autism, who were criticising ASC traits, or communication style, in an adult, yet their children had those same traits that they were asking society for understanding of. Then I started reading of the experiences of others on the spectrum, who also faced problems on forums. It struck a chord, when one person described themselves as being targeted and pushed out, by parents of autistic children, who they assumed would be grateful for a window into the mind of an autistic adult, to enable them to understand their own child better.
I have found this too and I am still trying to understand why. Of course there are the social games that exist in NT society, those games we on the spectrum fail to understand; do not play and tend to either fall victim to – or are blindly oblivious to. It stands to reason I guess, that those games will be the same on forums. I have realised that parenting forums, seem to be about exchanging mutual stories and supporting one another, but that the expression of oneself as an Asperger’s adult, doesn’t always seem to be appreciated, especially if it involves the hard facts of life. The NT parent often doesn’t seem to want to face, that no matter how much supporting/treating/attempting to “cure” their child, they will still be highly unlikely to have the same life as an NT. They will remain autistic as an adult, even if they are existing in a mainstream way, they will have anxiety over things that NT’s won’t; their sensory difficulties will always play a part in their lives even if they manage to mask the impact of them for periods of time; they will always need a certain level of control; they will usually be exhausted by socialising and may avoid it; they will misunderstand others and be misunderstood by them; struggle in employment (around 75% are unemployed or only in part-time employment) and relationships – including romantic ones. Even those with the so-called mildest form of autism will struggle and will be prone to mental health issues, due to trying so hard to fit in, but always having difficulties doing so, or it just being so plain exhausting. This link gives some examples of how autistic adults struggle: http://www.iancommunity.org/cs/adults
Parents love their children and desperately want the best for them (I’m a parent too!), are trying to ensure they are able to “fit” into society, but this is part of what is driving the lack of acceptance, lack of understanding, lack of reasonable adjustments, for us ASC adults. We don’t want to have to conform to an NT way of being, we want to be allowed to be us – and for that to be OK. NTs wrote the rules for society, but they often don’t fit us, why can’t new rules be added, most of the existing ones are ridiculous anyway! It’s why I challenge my autistic children’s schools to make those adjustments, to adapt things for them, because they are suffering in being forced to fit in and change is needed. If you don’t believe me, ask yourself why places like Autscape and Autreat exist.
So I came to the realisation, that it is because an autistic adult is an unwanted reminder, an uncomfortable acknowledgment for some parents of autistic children, that their child will be like me one day. An autistic adult, still having struggles. For any parent, they want their child to have equality and be able to achieve. Admitting that it might not happen, certainly not the way they hoped, could be a tough thing to face. That all those supports that help their child get through school, and catch up with childhood milestones, might not bring the idealistic end result they hoped for. There are parents veritably traumatised by their child’s autism diagnosis, they go through a kind of grief, depression and sadness. So perhaps they plough all their efforts into obtaining those supports, hang on to the fact that it must be helping and their child will somehow “recover” enough to not seem autistic. But what they don’t see, is that sometimes, this might enable an autistic child to grow up to “pass” as NT, to mask many of their difficulties, but inside, they are often still going through the same torments, difficulties, challenges and stress as they ever were. An acquaintance told me once, that she had immersed her Asperger’s daughter in as many play-dates and sleep-overs as possible as a child. She grew to be a past master at fitting in, but it did her absolutely no favours as she was suffering greatly inside as a young adult. The pretence actually adds to the pressure and the stress we suffer. It’s what I advocate as being ill-advised, the square peg into the round hole mentality. I understand that it is doing a child a service by giving them speech and language therapy, potty training them and calming aggressive tendencies, but there are so many autistic traits that need to be accepted as just, OK.
It just saddens me, that NTs often want to play those games, to make themselves feel better. So here are some questions for NTs to ask themselves: Can’t we celebrate some of the positives of having autism? Can’t we allow autistics just to… be? Do we have to be shocked and angry when someone tells the honest truth without malice? Do we have to shut people out because they don’t conform? Do we have to expect them to be like “us”? Do we have to continue to force these square pegs into round holes? Because society is currently blinkered, does that mean it has to continue to be? When we face an autistic adult, can we not stop turning our faces the other way? Can we not stop criticising their traits as something to be ashamed of, or ganging up to ostracise them? Is this what we want for our children? When our children are bullied or ostracised in the playground, is this what we want to replicate as adults? Or do we want to be like those playground bullies?
So next time you are online (or even in “real life”) and you don’t like an ASC adult challenging the status quo, delivering information in a factual way, or saying the things no-one else will say, maybe try opening your mind and realising that if we don’t do it, perhaps no-one else will. Everyone has their purpose in life. Some of the greatest minds that have existed are thought to have been autistic. Sometimes, it’s the black sheep that makes the biggest mark. And that person allowed to be themselves, could be your child.