Autism and Asperger’s Syndrome are classed as “autism spectrum disorders” and the spectrum is wide. On one end you will find people who may be non-verbal, may be incontinent, may be violent and may have additional disabilities such as epilepsy or deafness. On the other end you will find people who are able to function completely in society with no discernible disabilities but have difficulty with the finer points of social communication, such as understanding other people’s jokes and picking up on body language, maybe having slightly obsessive habits or unusual hobbies.
My son has high functioning autism. In earlier years his autism mostly exhibited as developmental delay leading to poor speech and communication skills; lack of awareness of danger to self and others; incontinence, and a range of obsessive behaviours with lashing out or meltdowns when those behaviours were thwarted. While he appeared like his peers on the outside, his condition was life limiting in many ways. Even just leaving the house was fraught with complications: would he refuse to leave the house, would he have a meltdown in public, would he run away, would we be able to find somewhere that sells food he can eat (that’s a whole other post another time), would he sit still long enough for us to eat before running off (or trying to) and could I find somewhere to change him if he needed a nappy change?
The last one was a major inconvenience. Like many autistic boys, he did not want to potty train. Nappies worked for him, he could not see why he should change a good thing. He took much longer than his peers to toilet train, by some years. We managed to get him dry for school Reception year, at four years old. However, cleanliness was an entirely different matter. “Letting go” to poo was terrifying. He would rather suffer agonising gut pain and constipation than let go, and he frequently did. He would hold on for so long that eventually he would start “leaking” around the poo he was holding onto. Then there were the soiled nappies when he could hold it in no longer. Peer pressure did not work, rewards and incentives did not work, praise did not work, yelling and punishment did not work. Tears did not work. Distraction did not work. Appealing to his better nature did not work. Explaining that it would take the pain away did not work. Refusing to let him off the toilet until he went did not work. Nothing worked. You can take your “toilet train your toddler in a week” books and flush them down the loo; they’ll be the only solids going down there. As with everything else, he trained himself in his own time, when he was ready.
I forget exactly when he finally got with the program. What I do remember is the feeling of helplessness and frustration and the relentless laundry. I remember having to change his wet nappy in a miniscule toilet cubicle in a cafe in Scarborough, when he was about three years old and there wasn’t enough room to fit two of us in and he peed on the floor and on me while I was getting him out of his clothes. (I was undressing him because he struggled with buttons and buckles until he was about eight years old and he still can’t tie his shoelaces.) I remember him being too large to lay down on a baby changing unit to change a soiled nappy. A three-year old does not fit on a pull down baby changing unit, so down onto the floor you go.
Fortunately, I discovered the National Key System and obtained a Radar key from Disability Rights UK, allowing me access to the disabled toilet network throughout the country. It made life so much easier – the disabled toilets were large enough to change him on a mat on the floor in privacy. They also eliminated the need to suffer the terror caused by hot-air hand dryers. (His autism includes sensory overstimulation and the unexpected roaring of a hand dryer scares him and hurts his ears. To get him into a standard public toilet, I would have to hold my hands over his ears to muffle the sound of the hand dryer. Not ideal.) However, even with a larger cubicle there were still problems. Anyone needing to be changed has to lie down on the floor. The floor of a lavatory. Think about what they’re lying in – rain, mud, maybe dog dirt, other dubious fluids and matter…. Anyone changing that person has to kneel down on the floor in the same muck. Anyone being changed has to be able to get to the floor and get back up or be lifted up. Anyone changing also has to be able to get to the floor, get back up and potentially lift the other person up. That’s fine with a three-year old but what if it’s a teenager or a fully grown adult?
In this world where people are fighting for the right to use the public restroom of the gender of their choice, there are people who still can’t even access public toilet facilities.
It seems to me that in a civilised society it is terribly sad for someone to be denied such a basic need as access to a public convenience. I believe that not only should standard disabled/accessible toilet facilities be readily available but also there needs to be wider provision of appropriate facilities for the more severely physically impaired. Undoubtedly money is scarce in this economic climate but it’s a legitimate need.
Changing Places is a campaign calling for the installation of public toilets with height adjustable changing benches and hoists. The campaign’s website includes a map and national register of existing facilities. I think it’s a worthy campaign and a very useful register. It transpires there is a Changing Place close to where I live and several in the city centre nearby. I don’t know if they were there when my son was younger but knowing about them would have been very helpful if they were.
I’m glad to say that life is easier for me and my son now. His fear of hand dryers has reduced to a dislike, he can dress and undress himself, he is fully in control of his body (except when he laughs a bit too hard) and he can wipe his own bottom unaided. We fight other battles but this one has been won and for that I’m truly grateful.
In conclusion, the next time you spend a penny, just spend a moment to acknowledge what a luxury it is to “go” when you need to. Maybe you’d like to join the campaign or maybe you know someone who would benefit from knowing about the register of existing Changing Places.
Thank you for reading this post. Have a great wee-k!