Last week we had a rare check up appointment for my son at the place where he was diagnosed with autism. It was not a good one. At these appointments, I tell them all about our issues, there used to be lots. We had a very unhappy and stressed boy with lots of meltdowns, some quite violent. He would not leave the house other than school, home was his safe space and he needed all of his free time in his room recovering from the stress of school. School was incredibly difficult for him but he was attending. He used to be able to mask and behave as they wanted him to at school, but towards the end of his time there he couldn’t manage that any more and he was at risk of being seen as ‘ the naughty child’. At this stage 1 year ago, he had an appointment at the same hospital as last week’s appointment, we told them everything that was going on and asked for S to be referred to CAMHS because of his anxiety. We were told no, because he is autistic his anxiety needed to be viewed in the context of that. Blatant discrimination and probably not even legal but that is for another post.
Now we are in a place where we have a happy child, who rarely has meltdowns. He has started going out again (albeit not very often). We don’t make him go out, he chooses to. We go climbing, trampolining, Pokémon catching, swimming (all things that we couldn’t do when he was at school). He even has been to a home ed group a few times (which was sensory and social hell for me but both kids seemed fine). My daughter who was also anxious at school has now stopped with the term time bed wetting and is much happier. The two of them fight so much but since they both are doing home ed together we have had some times where they have been playing together. Last week we spent the whole morning trampolining (2.5 hours!!!). They were in fits of giggles laughing at me falling over as I tend to do. I have foot drop and I trip over my feet – hilariously entertaining. The good mood they were in carried on into the afternoon and they spent time together in the afternoon without me needing to referee. Home ed is going to be good for their relationship. Anyway, I digress. I’m just trying to explain how much better our life and the mental health of all of us is now we have put school behind us.
So given the little concern about us when it was all going wrong, you would think that at this appointment there’d be even less concern, but no that’s not how it works. I mention home education. Red flag! I mention my autism. Another massive red flag! An autistic mother who thinks she can do a better job than school (it would be virtually impossible to do a worse job than school). She started going on about the long term and drew me a picture of a number 8 and a number 16 with a line between them. ‘I’m not judging you but…’ (this was after I had been moaning about how all my experiences so far had been people thinking they know better than me and judging my parenting) ‘he’s 8 now, what about the long term, what about when he is 16?’
I was really confused by that question. She paused like I was supposed to answer it. I hesitated then said ‘I don’t know what you mean?’. I eventually realised she was implying that he wasn’t going to be prepared for college or getting a job, so I pointed out that many children are home educated until that age and there’s evidence that shows they do better academically. Plus just because he is being home educated now doesn’t mean he will be forever.
She continued to be negative and judgemental and I was getting flustered and upset. She said you are caring for them and teaching them, you’ve got your own diagnosis what if you stop being able to cope? I pointed out that the most stressful time of my and my son’s life was when he was in school. Now everything is going well. ‘Yes but if you protect him and keep him away from everything…blah blah blah… load of patronising nonsense’. I pointed out I was quite capable of getting him out of his comfort zone sometimes but I will do it safely and at his pace.
She mentioned some workshops that we go on in our region after a diagnosis. I’ve already done them. They were really excellent but I am already knowledgeable about autism so didn’t learn anything new. I tried to say that but it came out wrong and I said I knew more about autism than the people teaching the workshops anyway. I saw her roll her eyes. I came across as very arrogant, it was the wrong thing to say, but I was so annoyed at her reaction. She didn’t know my background. I may well be a clinical psychologist or a paediatrician for all she knew, but she just saw me as an autistic mother and she was making a judgement about my expertise based on that.
I started crying in the appointment. Would have been weird if I hadn’t as I always cry when I get cross and frustrated that I am not making my point as clearly as I’d like. I imagine my tears were further evidence that I am unable to cope. Not evidence that they are bad at their job because they don’t help when we need it, but now judge us negatively after we have been forced to solve the problems ourselves.
So in summary here is a list of injustices and disadvantages that you face when you are me, (an autistic mother to autistic children)
– school goes wrong because mainstream schools often aren’t flexible enough for autistic children
– unhappy anxious children, which leads to unhappy stressed parents
– FORCED to take matters into your own hands and withdraw them from school (‘elective home education’ is really not an appropriate name for it).
– then everybody judges you for thinking you can do a better job than school. Home educators are a stigmatised group, just like autistic people are.
– assumptions get made about your mental health and ability to cope just because you are autistic. There’s an assumption that the professionals must be better placed to know what is best for your children and an assumption that school is better than home education. These assumptions are being made even though I have been telling them how much happier we are and how much progress we have made since we started.
– You get put in a position where you feel the need to defend your decisions verbally. I process verbal Information more slowly than non autistic people do so I’m at an immediate disadvantage already. The stress of not making myself clear makes me anxious, which makes my communication worse and I end up putting my foot in it and crying. Unfortunately crying means I lose credibility.
It’s an impossible position to be in and one that so many autistic parents are familiar with.
The end result of this appointment is that my son has been referred to a psychologist. The irony is that his mental health is so much better than a year ago at the last appointment where they wouldn’t refer us then. We don’t need a psychologist. We need an education system that works for all pupils.
So there you have it. If anyone was wondering why some people decide to stick with their self diagnosis and not get an official one, this appointment provides an example of a reason. You will get negatively judged when people know you are autistic and this can be risky when you are a parent. I dread to think what she has written about me in the notes.
I would love to hear other people’s stories about similar experiences as an autistic parent or home educator in the comments.