Thursday, 23 February 2017

Masking does not mean everything is fine.

Appearing to be ok is what PDA boy does. But contrary to other's opinions, looking carefree and relaxed does not mean this is what he is feeling inside.
He may be enjoying himself, but if you're seeing a perfectly behaved, well mannered boy, you are almost certainly seeing an elaborate act, not a happy contented boy.

I have been told so many times that my son's behaviour when he's with others is a mark of success, how well my husband and I have done, but I see it a different way.

What tends to happen if he spends time away from home, and I'm told how well he's behaving is as follows:

For a start, I find it very difficult to shake off the feeling that I'm being told it is me that's the problem, even though by now we know beyond shadow of a doubt that that's not the case. This is something I need to work on.

I feel the need to explain that he's masking, I'm not quite sure why I do this, it's perhaps a reminder to myself more than anything else, because others certainly don't seem to understand what I'm saying or why I feel the need to say it.

I feel a flash of resentment (that I immediately quash), because these people who rarely see him are having lovely, relaxed times with him.
But then I feel bad because I realise that it's them having the relaxed time, not PDA boy, who is likely to come home angry and needing to let off steam as he is stressed at having to hold everything in. Don't get me wrong, he will have been having a fun time, but at the same time the effort that goes into complying, being polite and not swearing, having the right facial expressions etc is exhausting.

I feel a weariness of what will happen when he comes home. It will be difficult. And no, I'm not being negative when I say this, after years of experience, we know that we will have to be prepared to allow PDA boy a great deal of leeway when he arrives back at home, and be open to treks around the village at 10pm to help him to settle, or cake baking, knowing full well that following a recipe is a demand and PDA boy will always deviate from this and add interesting ingredients, such as vinegar or onions, rendering the resulting mess inedible. We know there will be a few days like this as he recovers from a visit.

If I talk about this, others will put a positive spin on things. It's great that he is able to mask so well, it means he will certainly cope in the real world because he can control it, it means that my husband and I have done really well in making sure he can appear to be neurotypical. Being able to mask is seen as a sign of success. Yay, he's cured, if only for a few hours at a time, but, well, yay, let's celebrate it.

But we don't feel like celebrating it. We feel that the very act of masking is likely to mean that PDA boy is less likely to succeed in the "real world" (whatever that is).

PDA boy is very socially aware, and as such he is aware of the fact that, compared to others his age, he is different. He is aware of the way people who are different are treated. Whilst his teachers couldn't "see" his autism, it was obvious to his peers that there was something, so PDA boy built up a persona that was acceptable, cool even, which confused his teachers, confused his observers, confused CAMHS, confused us at times.

The main difficulty PDA boy has as a direct result of masking is not being able to advocate for himself at all when in school or visiting a friend. If he's unhappy, or angry, or even feeling ill, he cannot tell anyone but very close family (which means me, my husband and probably his sister) which means he can be reluctant to socialise. We have had small breakthroughs where he has broken down during a meeting at school, and because I was there to ask the right questions, he was able to nod or shake his head and in that way was able to show someone else how bad he was feeling, but I don't think this would have happened had he seen them alone, this made him feel anxious to leave me, I think in a way I became his interpreter.

This worries me for his future, because he will literally look fine in some very tricky situations, and the first anyone will know that he's not is when he refuses to do it again. I'm hoping that the next few years will provide opportunities to work on this, because it does concern me that any jobs he may have could break down with few warning signs. It's important that he learns to admit when something isn't working, or is making him uncomfortable, because without that skill it will be very difficult for others to understand how to support him.

I'm sure I've said this before, but one of the main problems we encountered with CAMHS was their judgement that OK in school = ok everywhere, and that clearly the problem lay with parenting because the problem was at home, not school. They felt we should bring our parenting in line with school's methods, even though we could see how much they were damaging the poor boy. They showed no understanding of masking and how it can affect someone. To them appearing to be fine was a sign of success, it meant there was no issue, the boy has obviously learnt to cope, when in actual fact masking directly led to the breakdown that meant we had to take him out of school.

My older son, Brian (not his real name), also masks, and has the same problems advocating for himself. This, alongside suspected OCD, has led to him being very reclusive. He worries about eating things that other people may have touched, and knowing that in a situation where he is visiting he will be unable to turn a meal down, because he feels it may be perceived as rude, he now refuses to visit at all, because he feels his inability to say no will mean he eats something that will make him ill.

PDA boy's masking led to problems in school. Because he had to keep up his image, he couldn't use the reasonable adjustment offered, as it would have marked him down as different. When the stress of daily life became too much and his mask started to slip, he did the only thing he could to prevent others seeing this different side, and he refused to go into school. The anxiety of keeping up appearances knowing that this was becoming an impossible task meant he was simply unable to go in.

For so many, an autistic person managing to appear "normal" is seen as the optimum outcome, we see this clearly with therapies such as ABA and the willingness of some parents to put their children through dangerous "treatments" which promise to cure the child. But masking, being able to keep up an act of not being autistic leads to chronic mental health problems, intolerably low self-esteem as the person is led to believe that they are not good enough as they are.

Masking is not success.

Masking shows a failure in society, where many people cannot be their true selves for fear of rejection.

I don't want to be congratulated on having a son who cannot tell others that he'd rather not have baked beans, or that he needs the loo, where is it please?

In the few weeks that PDA boy has been out of school, I have noticed that he has started flapping again. Not much, but in happy moments it is starting to happen, and that makes me happy. A small sign that he's allowing himself to him again. He's more relaxed in selected others' company, and being far more chatty, and telling rambling jokes with no punchline, a sure sign that his confidence is starting to creep up.

As this continues we will be visiting these people more and giving PDA boy more chances to speak out for himself.
This will require an element of training for these people too.
Let's imagine you are offered a biscuit. You turn it down. For the most part the person offering will not stop there, they'll carry on with "are you sure?" "Go on, one won't hurt" and all manner of quizzing and persuading takes place. For PDA boy this is a nightmare. If he's said no he means no, and anything beyond an "ok, well you know where they are if you change your mind" makes him feel stressed, makes him doubt himself, and stops him from advocating for himself, because these common responses mean he hasn't been listened to, mean his opinion is wrong, even over a simple biscuit.

It's going to be a learning curve for everyone involved, but I'm confident that, given the space, patience and time, we will slowly help PDA boy to learn that his feelings and needs are worth voicing.

5 comments:

  1. Great. I'm having a hideous time with some 'professionals' who have zero knowledge of a very debilitating part of life. There was a time we thought the world was flat ! It seems there is no convincing professional s who don't want to SEE the problem. Far easier to say mother is the problem from my sad experience. Thanks for sharing.

    ReplyDelete
    Replies
    1. I'm hoping that with more awareness PDA will become more well known. For now bough, it is frustrating!

      Delete
  2. This comment has been removed by the author.

    ReplyDelete
  3. We can so relate to this, but as you have experienced, professionals hardly recognise pda. Our son has been out of schooling for a year yet we struggle to get a diagnosis to allow him appropriate education setting. How/where did you manage to get recognition from the Authorities of his pda? We have been through so many agencies who he "doesn't fit their remit". So Frustrating and upsetting our lad doesn't get the help he needs ☹

    ReplyDelete
    Replies
    1. We ended up having to go private, and saw Dr Jo Jones and Dr Judy Eaton.
      It's such a postcode lottery. Some areas appear to be more open to PDA, others are still wary and dismissive.
      I hope you find some answers soon.

      Delete