Masking 


This morning a friend shared the following article with me: 

https://help4psychology.blogspoth.co.uk

‘Children who ‘mask’ or ‘camouflage’ their Autism.’ 

So much of this article relates to both my own and now my eldest child, Lou (5.) I was so grateful to my friend for sharing this as I’ve recently had ‘writers block,’ and whilst reading it sparked a whole blog post in my head! 

Here’s our experiences of ‘masking.’ 

Lou is now showing more signs of frustration via a refusal to do ‘work’ at school, on the whole she ‘complies’ and doesn’t display the ‘overloads’ or ‘meltdowns’ that we experience at home on a daily basis. It may be difficult for professionals to guage how a child can ‘switch’ it on and off and change so much and understand fully how a child can be so ‘Jekyll’ and ‘Hyde,’ but I’ve had first hand experience as I did exactly the same as a child, I can’t really remember even speaking at school, I followed the rules in fear of being ‘told off,’ and drawn attention to, I held in the frustrations and anger I felt all day, instead of punching the boy who called me names all day, I’d save it all up and then ‘explode’ at home. I was actually quite horrible to my mum particularly (so sorry mum!) The exact same thing that Lou does with me now! I would take it all out on my mum as she was the closest person to me. I could be winging away at her whilst walking down the street and if we turned a corner and saw someone else (someone we knew, or a stranger,) I’d immediately stop in fear (I think) of being rejected or thought of in a bad way. In fact, I still do this now, but it’s now directed at my partner, the person that I now ‘offload’ to the most, and no one else really gets to see that side of me. I have no idea why I do this, my brain just tells me to and it’s puzzling to me even at the age of 34! 

The quote from the article: ‘Children who ‘mask’ or ‘camouflage’ their Autism.’ About grown women in social situations rings so true to me: 

“I walk into the room and feel like people are looking at me.” 

“Everyone else seems to know what to do.” 

Source: https://help4psychology.blogspot.co.uk/2016/11/children-who-mask-or-camouflage-their.html?m=1

I also relate so much to the section that talks about when: 

“Friendships become much more complex.” 

“What is said is not always meant, girls talk behind each other’s backs and make nasty and sarcastic remarks.” 

“For a girl on the spectrum, this is unbelievably difficult to negotiate.” 

I can remember being around 13/14 years old (a time where I was struggling with eating,) and the girls who I was friends with at the time were messing around trying to trip each other up, one of them said towards me: “don’t trip her up, she’ll snap in half,” a comment that has resonated with me my whole life, some people may have laughed it off, and just forgotten about it, for a girl on the spectrum, this simply isn’t forgotten. 


I recently spoke about friendships during my adult ASC assessment, friendships for me have always been tricky, never really feeling like I ‘fit in,’ it’s only today that I’ve finally learnt what true, and respectful friendship means. I stuck to one particular friend for the majority of my school life, to feel safe, I literally didn’t know who else to go to and I feared so much that I’d end up with no friends at all and just end up on my own. The result of this was years of going along with someone who did and said things that I really didn’t agree with, but couldn’t speak out in fear of confrontation. If this person told me to do something, I literally did it, I was a puppet on their string. I watched this ‘friend’ sneak make-up in their bag/coat in shops without paying, and as a strict follower of rules I’d find this so wrong and I’d then panic incase it was thought that I was doing the same. This person was rude to people and aggressive, everything opposite to me, there were so many ‘awkward’ moments I lost count! As I got into adulthood I came across other people who were connected to this friend and they all talked behind each other’s backs, their main topic of conversation was to ‘slag’ each other off, I got so confused around who I could actually trust and I became extremely stressed and just felt so uncomfortable around these people. In the end a confrontation occurred and I was called ‘nasty’ I’d never fallen out with anyone in my life, I became so stressed that I had to cease all contact to avoid having a complete breakdown. So in fact, masking the fact that you get on with people, when you really don’t does lead to mental health difficulties. In reflection these sorts of friendships were ‘toxic,’ I feel liberated and so much better for finally ‘breaking free’ of someone who I’ve come to realise, that I was actually quite scared of. 


The quote: 

“So many parents report of not being believed or being accused of poor parenting when in fact they are trying the best for their children.” 

Source: https://help4psychology.blogspot.co.uk/2016/11/children-who-mask-or-camouflage-their.html?m=1

This has been the case for us now for over 3 years, as our child, on the whole, complies in an educational setting, how can we get professionals to realise that under the surface, she really is struggling and letting it all out in her safe, home environment? 

I have spoken to parents who have been accused of fabricating their child’s difficulties, and this makes me so upset as why would anyone actively want to make this up? I’ve even had the term ‘attachment disorder’ thrown at me as many other parents have. I’ve said this over and over again in many of my posts but all we want for our daughter is help and support, and I’m so passionate about this as I’m a prime example of what happens if girls on the spectrum slip through the net, and the result has been years and years of being misunderstood and various mental health difficulties, particularly from my teenager years onwards and it’s been heightened at times of great stress, such as relationship breakdowns. I do not want this for my child.

“The long term risks of not helping these children and young people are significant and real and many will go on to have relationship difficulties, problems holding down a job and significant mental health problems in adulthood.” 

Source: https://help4psychology.blogspot.co.uk/2016/11/children-who-mask-or-camouflage-their.html?m=1

And I completely agree with the closing statement: 

“PDA and less obvious forms of Autism are not a new phenomenon – we just need to get better at identifying them early.” 

Thanks for reading 🙂 

Spectrum Sunday

Update on my assessment journey


So after having my initial adult ASD assessment on 13th April 2017 and it going to a panel to review, I had the feedback letter through the post today. 

On the day I filled out questionnaires whilst in the waiting room and then had a 1 hour and 15 minute discussion based on my answers. 

Firstly the report went through a lot about what I had discussed on the day in terms of my childhood, how I am socially and certain ‘traits’ such as ability to handle changes, collections of items and sensory difficulties. Many of these aspects I had included in the paperwork that I’d sent in to the practice because I knew that I was likely to freeze on the spot when being questioned directly. What this meant is that I was questioned and guided by what I had aleady shared before the day of the assessment. 

The main thing from this feedback report was reading the results of the ‘Adult Autism Quotient (AQ) questionnaire,’ which measures behaviours, feelings and experiences associated with potential ‘Autistic Spectrum Conditions.’ Individuals with ASC typically score 32 or higher and I scored 47. 

I then read that: 

“The AQ is a screening tool and does not provide enough information for you to be given a diagnosis, but a score of more than 32, then taken alongside the information discussed, suggests that further assessment of an ASC diagnosis is warranted at this stage.” 

These are the recommendations given in the report: 


One thing I have noticed is that the term ASC is now being used, when I originally received my referral letter it stated it was a referral for an adult assessment for ‘Asperger’s Syndrome. ‘ Since I began blogging in March 2016, I’ve used the term ‘Autisitc Spectrum Disorder’ (ASD) and reading this on a report does make me question if I’m now using the ‘correct’ terms! 

I’m fully expecting the journey to a possible diagnosis to take a while longer, I felt happy and sad yet again at the same time, but again a great sense of relief, all those years of doubting myself, questioning who I was, telling myself I was ‘different’ was for a huge reason and to be on the path to having this clarified for me is so liberating. 

It is sad though, that my process for adult assessment is so much more straightforward than my own daughter’s, since January ’17 I’ve not really known what is going on in term of Lou’s assessment, no word of any assessments happening in school, no information. And to think that without understanding and researching regarding my own child, I’d have never have found out about myself. 

My advice to anyone wondering about themselves being on the spectrum is that it’s never too late, try the AQ questionnaire and take it to your GP. 

I will now wait for my next appointment and continue to share my journey 🙂 

Thanks for reading 🙂