One Autistic Person’s View on Being a Parent

Really hate holidays... For those who have school age children or dependents how many families are really able to get out over the holidays? Planning to go out with a ASD child and NT child not easy... Especially when they clash as she wines (sic) him up...

   Spotting the above post on the wall of my most frequently used social media site this morning, prompted me to write this. Whether or not it helps anyone is another thing and, as I only have four followers, one of whom is dead so expecting this to go viral is unrealistic.

My reply to the post was:  It's very difficult. I kind of adopted a detached attitude, which worked better than thinking I had to somehow cope with every little squabble. Removing myself was incredibly effective. It's as though they were unconsciously competing for my head space.

   School holidays, for young Ed, were pretty much the same as term time as he was rarely there, anyway. Out of a possible nine terms in school at infant level, he barely attended for four of them and a good deal of that was part time. He went through four schools in three years, being permanently excluded from three of them. The ‘successful’ placement was at a small village school founded by the local church and held n the stranglehold of the Rector and his wife, who were both controlling and dictatorial people. Mrs Rector took a dislike to my son who, it seemed, displayed somewhat odd behaviour the good lady wife perceived as naughty. When my son’s class teacher gave him a certificate for good behaviour, Mrs Rector snatched it off him in front of the school and tore it up. How very Christian. I spent an entire performance scouring the faces of the 22 pupils of the school looking for my boy in a whole school production laid on at one of the churches the Rev Rector was in charge of. After the show, I found him in a back room, playing with a water game. Mrs Rector had banned him from taking part and nobody had seen fit to tell me. Years after events like this, my son still tells me new stories about the pain he carried as a child. Like how he was made to stand on a chair at Cubs because he did not want to join in. Typical of an AS kid but, of course, he was undiagnosed at the time because his behaviour was seen as the result of being brought up by a single parent struggling to cope and a bigger, wider, society assuming he was spoiled brat, always wanted his own way, needed a good hiding or even, as my mum once yelled at him ‘just like his mother’. She stormed out of the house in tears after he asked why that would be a bad thing.

'Edmund' now

   Which is why school holidays were almost an irrelevance, with a few exceptions. Nobody asked Edmund why he was not at school during holiday times. The rest of the time was worse than the run up to Christmas. In place of being constantly asked if he was ‘ready for Santa’,  who has never visited our house, incidentally, his most frequently asked question by shop assistants was why he was not at school. Out of his own, unprompted, initiative, Ed used to say it’s an inset day. What else was a 5 or 6 or 7 year-old supposed to say? I’ve been kicked out of school? I don’t go to school? I’m between schools at the moment, thank you? Why don’t you mind your own business? 

   Whatever time of day or place in the academic year it was, I was grateful for the positive help and input we got. There were holiday clubs in the area for disabled children and, although he had no official diagnosis of anything other than ‘mother struggling to cope’, they gave me some respite. Edmund hated them. He spent their duration riding bikes around the yard, on his own. Friends and family would either take him out, or both of us. There was also Kerry, a part time foster carer who took the wee boy for respite days. I sat in reception at the Social Services office, refusing to move until somebody helped me. We were appointed a social worker and introduced to Elaine, the first respite carer. It was a disaster. Edmund only went once after the introductory visit because Edmund locked himself in the bathroom and refused to come out. He was there for hours and eventually coaxed out by a social worker from the local family support centre. When asked what went wrong, he said he had not liked her; she was fat and smelly. Now, with hindsight learned by lots of trial and error, it would have been far better to have left the lad in the bathroom but people do feel they have to manage situations. Nobody knew he had Asperger’s at that time, granted, but even when they did, his behaviour was still dealt with poorly because nobody took any notice of his primary carer.

   Based on an understanding of my son aged somewhere between 6 and 10, I would now give this advice to anyone looking after him. This is not general advice for any parent of any autistic child. If you are such a parent, then you will no doubt know them far better and have a much closer relationship with them than anyone else ever will. So, then, these are Laurie’s hot tips that work with young Edmund. They may be useful to you:

1-      Keep the environment calm

2-      Play down every potentially volatile situation; raising your voice rarely works and usually causes tension to escalate

3-      When face with a weapon (chair, cricket bat, etc) look directly at the child NOT the weapon, walk towards him and remove the object. Stay calm, move slowly. He is your son. He does not want to hurt you. Back off immediately if you sense any danger to yourself.

4-      He needs you to be bigger, braver and stronger than him, or the stress he’s experiencing so tell him you love him; cuddle him and spend time with him. Your relationship can never be too strong

5-      Do not try to use words to reason with him; verbal language is often lost on even verbal autistic children (I used to be one of those, too)

6-      Be consistent. You cannot love him one day and hate him the next. If he’s clever today, he will not be stupid tomorrow.

7-      If you want to know what the hell is going on when he tries to push you in front of moving cars, has a meltdown in Asda or kicks holes in the walls, wait until the situation is calm and you are friends again.

8-      If he falls out with his siblings, leave them to sort it out unless weapons are involved, then see point (3) above.

9-      Be clear and consistent. Do not lower yourself to a shouting match. If it gets tense tell him you are going to make a cup of tea and you will not speak to him until he can be pleasant.

10-   Keep a door key and mobile phone in your pocket when you go outside for any reason. I’ve been locked out a few times so this is a good idea.

11-   Essentially, if you can’t remove the stress from the child, move the child from the stress. It doesn’t matter whether it’s a sibling or situation. Sometimes the situation is you.

12-   Remember how to laugh.

…………………………………

My children, two male and one female are now 31, 25 and 20. The daughter is, as she says, the ‘funny one’, the ‘middle child’ and the full sister of the eldest. Her brothers were both diagnosed with Asperger’s syndrome after me and how it all came about is a story for another day. My daughter has often been urged to take the test but she does not want the label, although she, like the rest of us, can clearly see her greatness. It takes a certain kind of special to store her vast DVD collection in alphabetical order; not only that, but they have to be the right way up in the box, with the titles laid horizontally. They have never all lived permanently under the same roof.