Parents/Carers/Guardians and Autism
One thing I would like to talk about is the impact on (ok I’m going to use this word for ease in the post) carers who is looking after a person with autism. Because, you see, it often doesn’t end.
As I’ve said before, autism is a spectrum and somebody with autism and you can be anywhere on the spectrum, with all the associated problems, as well as any other health condition. And some people with autism are nonverbal – whether through choice or reason. Which of course makes everything more complicated.
And if there is a non-verbal, autistic, incontinent individual that’s big, there can be real problems. As an example, if the carer is small in size, they may need help with seeing to the needs of the individual, especially if this means overnight care as well. . It’s very difficult (nearly impossible) for a small carer to lift a six foot person onto a change bed in order to clean them. And what if you are needing 24 hours support for that individual and cannot afford to pay as well?
Sometimes, the only answer is to put the person with autism in some kind of a home, and then the carer and family can then take them out, come to visit or whatever, without the need and expense of full-time care. That then means it gives them time to care for whatever family is left behind. Thus it gives greater freedom to the family and the individual concerned as well.
One of the things often undiscussed is the lack of sleep carers have. I remember that Johnathan was up at least 3-5 hours a night – sometimes even ALL night many a night. And the exhaustion I experienced wasn’t lessened just because he was in nursery in the morning. I still needed to drive Kevin to and from work and look after our house and I came to the realisation that I couldn’t do this alone. I needed some help.
So, I tried to get people to help us – firstly as carers for me and then secondly as carers for Johnathan. And it all fell apart for different reasons (one being we had children AND animals). In the end, I found a service that would do it all. However, of course, they need to be paid. And I am in the very fortunate position that my husband (although disabled, as well as me) works full-time. I can’t remember if he said it is the largest or second largest expense we have. But it is that much, and that is only for six hours care support for me.
This is the reality carers of a person with autism face, and there is not an easy answer. If you are unfortunate enough to not “need” the money to pay for the individual, there are still issues that need addressing. And if you need the support, but don’t have the diagnosis, it’s a real problem. Whatever the solution turns out to be, it is never completely satisfactory, but is always the very best that you can do to support the individual.