I thought I would do a series on answering some of the questions that people might want to ask but maybe not know how to ask an Autism parent like myself. My responses are simply that my responses! I don’t speak for anyone else and know first hand that many other parents of children on the spectrum feel very differently and some think the same, so here we go.
Q. What is Autism?
A. Autism is a very complex, very personal diagnosis which effects every person differently. There are themes which show up, poor social interaction, delayed speech, obsessive behaviour but these are themes and not rules. Every diagnosis is different, my daughter for instance struggles to interact and communicate with the outside world, she lives in her own little bubble and on the whole is pretty content. Other children don’t sleep, at all! Others self harm, some appear to have nothing wrong and only when they collapse into a public meltdown to people see what is going on inside. To put it bluntly people with autism are wired differently, some wrongly and others just differently and as long as you work out the glitches you can live just fine.
Q. What causes Autism?
A. We don’t know is the short answer. There are theories, hundreds of theories from the MMR to low birth weight probably all the way down to women eating jam during pregnancy. You get the gist, most theories involve pointing fingers at parents.
Q. Would you want a cure?
A. This is a tough one for me, my daughter and her Autism are so delicately intertwined that I have no idea where one starts and the other stops. It is not like a tumour which you cut away and leave the original child in tact. I would have no idea who she would be without her quirks good and bad. I am also aware that things are harder for her and they will only get harder as her peers move ever further away, when I think about this side of things a “cure” seems more of a consideration. I often get angry with people who are very against the very notion of a cure (and there are many of these people) these people (I feel) only know the top end of the spectrum, the quirks, the difficulties probably on a par with myself, I doubt very much that these people have ever experienced the real dark side of Autism. The side where people self harm so badly they are hospitalised sometimes indefinitely, where the person is literally trapped inside their own body with no release. For these people I pray for a cure or maybe less controversially a prevention for future generations.
Q. Do some people use the “Autism” label to detract from bad parenting?
A. Probably, I can’t speak for anyone personally but I am sure there are people who would rather have their child diagnosed the Autism or ADHD than face up to their shortcomings as a parent. I should probably mention that getting a diagnosis for many people seems near impossible so anyone who actually starts on this route for the wrong reasons need a ‘check up’ themselves.
On the flip-side having a special needs child’s doesn’t mean you can slip into bad parenting techniques and it doesn’t mean that they can’t be naughty. Autism is a diagnosis not an excuse.
Q. Will your child grow out of it?
A. No. Hopefully she will grow with it, as will I as a parent and her advocate.
If your child grows out of their autism I would argue as to whether they had it to start with.
Would you be offended if I asked you these questions to your face?
A. No, I’d be offended if you whispered about me and my family to other people. I’ll also be less than appreciative if you start telling me about autism because your ‘sisters, husbands, ex-wife knew someone with ASD.’ Unless you live with my child day in day out you know nothing about her autism.
Some of this might sound harsh or bleak but it’s not its intention, knowledge is power and to have read Autism Acceptance we need to be able to have honest conversations. Feel free to comment with any thoughts or questions of your own x