Thursday, 28 January 2016

Extreme masking.

Most adults at some time will be familiar with hiding how they feel.
Perhaps you have depression, yet manage to keep up your professional persona at work, only to return home to a flood of feelings.
Or maybe you have a headache, beyond the reach of a couple of paracetamol, and you look forward to lying in a darkened room.
Or you have a chronic illness and use your downtime at home to recover from the stress of work.
Some adults manage to completely hide their personal struggles and pain, others are less successful, and there are some who will let the world know what ails them.

So why is it assumed that children are different?

Masking is fairly well documented when it comes to autism. The NAS has a whole page dedicated to different behaviours seen in school and at home. Dr Luke Beardon has a fantastic blog post that is often used by parents desperately trying to seek support and understanding for their children. There is another brilliant post well worth reading, and one that I hope will help to increase understanding for these children.
Professionals in diagnostic roles will talk about masking, explaining that many children will hide their feelings in school making their autism difficult to spot.

Despite masking being talked about with authority and apparent knowledge, it is coming to my attention that this phenomenon is not understood, and as a result children and their families are being let down. 

Not all children with autism will mask, with many, what you see is what you get, so behaviour in home and school will be the same, parents and teachers have the same issues to deal with and can hopefully work together. Sadly this doesn't always happen, and any difficult behaviour is often misunderstood and unfair judgements are made about parenting.

Some parents report that their child will behave better in school, to varying degrees, which shouldn't come as a surprise, autism is, after all, a spectrum condition, so the way a child presents will also fall within a spectrum.
So while some children will still show obvious signs of autism, they will appear able to cope with their surroundings and the work they are given.
I believe that this scenario is the one that professionals are talking about when they talk about masking. When diagnostic observations are made, stereotypical signs of autism are looked for, lack of eye contact, echolalia, stimming, signs of distress, social difficulties. These are among the signs that are noted by teachers, observing psychologists and support workers. When these signs are not seen, these professionals are baffled and see the child's behaviour as too sophisticated to possibly be autism.

But what about the children who don't show these signs, those who are very subtle, those to whom keeping up their school persona is the utmost importance?
These are the children who are most likely to fly under the radar, to miss out on the support they so desperately need.
It is at this time I feel it is vitally important to point out that masking does not mean the child is coping, indeed the opposite may be true. The act of holding in intense feelings whilst simultaneously copying peers and trying to keep up with work can mean extremely explosive behaviour at home, or even in the car on the way home, as the overload, anxiety and frustration have to come out, and where better than a place the child feels safe?
It can also mean that the child does not reach their potential academically, but as long as the child is not falling behind too much, this is often dismissed by teaching staff. I have heard it being said regularly by parents struggling to get help for their child that a child must be two years behind academically before it is agreed that there is a problem.

It is also worth noting that these advanced maskers may have great difficulty in telling anyone how they feel, particularly people they don't fully trust, so it is important to listen to and believe those people who the child will talk to.

Based on anecdotal evidence from parents of children like this, it is quite typical for the child to reach a point, sooner or later, where they can no longer cope with school. Education becomes nigh on impossible to access. The child has been failed by a system that largely does not recognise the need for proactive actions rather than reactive. In other words, support is not given until the child is showing obvious, and often distressing signs that they are not coping. 

It is my wish that professionals and support agencies will start to listen to parents' accounts and learn from them, acknowledge that parents usually know their autistic children very well and should be allowed equal credibility to those who see the consummate actor during a school day, or during brief observations.
It is my wish to see a point where these childrens' diagnoses are taken seriously and given appropriate support which may prevent the extreme behaviour these children display at home, and allow the child to continue to receive an education.
Perhaps this is too negative, but it is my wish that it will no longer be assumed that parents are lying about their child's difficulties, and their knowledge about their child will be tapped to the great advantage of the child and their family, and potentially have the knock on effect of greater autism awareness, understanding and acceptance as children (and the adults they develop into) will be better understood and supported.  

23 comments:

  1. Excellent 'post', spot on. I agree with everything (except my title - I wish! It's a humble Dr Luke Beardon at the moment). Well written and thoughtful, I suspect many parents out there will resonate with this.

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    1. You're right Dr Luke... It's racing around the support groups and advocates.

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  2. Thank you so much for his comment.
    Apologies for the wrong title!

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  3. Really well explained, thank you.

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  4. Excellent post Heidi, I'll be keeping it tucked away in my virtual scrapbook on PDA for future reference.

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  5. Yes to all of this. Tyger masks very well at preschool but has a meltdown once he gets home. I expect he'll be the same at school, too.

    Luckily, I have a pretty good understanding of ASD due to it running in my family and we live in an area with an excellent paediatrics team who are very up to date with their ASD knowledge so Tyger already has a diagnosis at age three. Had we lived elsewhere, though, there'd be a good chance his differing behaviour between home and preschool would have been put down to 'bad parenting'.

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  6. I spoke to my daughter's teacher about building trust and when she complains she's tired or feeling sick or unwell.... ask her if something is bothering her and if the gave changed anything even the slightest of thing to talk her through it.... as she is building it up and once out the door it's coming even before we get to the car

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  7. Luke can u tell me where we can access your best information on pda

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    1. Alison, if you have a look at the PDA resource there may be some information you can pass on to school.

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  8. Great post - it's going in my file of resources. Thanks for writing and sharing this!

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  9. Thanks for sharing all this :-)

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  10. Is there any info on children who mask in a therapeutic setting as well? How do children who mask successfully get a diagnosis of autism?

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  11. Is there any info on children who mask in a therapeutic setting as well? How do children who mask successfully get a diagnosis of autism?

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  12. We had to see a private paediatrician and psychologist who were experienced enough to see through the mask.
    If you have a look through the PDA resource (link below), or join a PDA group on Facebook, someone should be able to give you recommendations.
    http://www.thepdaresource.com

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  13. This sounds very familiar, and when our daughter's anxiety did lead to her dropping out of school altogether at 14 the Local Authority said it was a CAMHS issue, not an educational one, so she has spent 18 months at home without education or support.

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    1. Fiona, that's so sad and frustrating, but sadly very familiar.
      I hope we can reach a point where things are better for our children x

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  14. I have a 'highly strung' 15 year old who I'm now realising most likely has aspergers (although I read this isn't diagnosed anymore as a separate condition to autism?!). She has always been what I've always described as 'hard work' but about 18 months ago things really fell apart. The quite severe anxiety (social in particular) and depression came seemingly out of nowhere - only as we started to work through it it all stems from issues going back forever. The more I read about girls in particular with aspergers the more I see my daughter which basically means she was masking for more or less the first 14 years of her life! Thank you for this post.

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    1. Thank you for your comment.
      Good luck with the diagnosis process for your daughter x

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    2. Anonymous at the moment Asperger's is still diagnosed in the UK. It's the American DSM5 manual that has got rid of it as a separate diagnosis. The current ICD10 still has it. Some clinicians are pre-empting that ICD11 will lose Asperger's but it is only in draft stage and nothing is decided for sure yet. It always stumps me why some UK clinicians use the American manual.

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  15. "When diagnostic observations are made, stereotypical signs of autism are looked for, lack of eye contact, echolalia, stimming, signs of distress, social difficulties. These are among the signs that are noted by teachers, observing psychologists and support workers. When these signs are not seen, these professionals are baffled and see the child's behaviour as too sophisticated to possibly be autism."

    Masking doesn't mean stereotypies that you have described but masking the difficulties being experienced. Stereotypies can be done for pleasure not only for distress.

    You might like these posts of mine:

    https://planetautismblog.wordpress.com/2014/04/20/professionals-not-understanding-autistic-presentations-masking/

    https://planetautismblog.wordpress.com/2014/04/29/females-with-autism-the-tragedy-of-ignorance/

    https://planetautismblog.wordpress.com/2015/07/28/the-hidden-difficulties-of-autistic-children-in-school/

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    1. Thankyou, I'll have a look at those links.

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