And you never noticed

For my darling girl, when I find the time and the courage to write again: 

Dear SENCO, I did notice, I did tell you, repeatedly. I shared all the information. I had about my child with you. But your hands were tied, funding, policies etc.

You "didn't see anything" in school. Although my girl couldn't cope with school dining room, sat on a wobble cushion in class, wore her ear defenders constantly, was always the last one to be ready for PE, left school every day with Mum waiting at classroom door with her favourite cuddly toy and threw her school bag at mum, stomped accross playground, got into car, started to shake and refused to cry until car was on the main road and past all her peers who walked to and from primary school as a group, without their parents.

You never noticed that she ate the same packed lunch every. Single. Day?

You never noticed that on every school trip she needed to sit next to the same teacher, at front of coach and eat polo mints, because she got travel sick.

You never noticed her pulling her hair out in class, scratching herself til her cuticles bled, that she returned to school after summer break with eyebrows and eyelashes and hair ina pony tail. You never questioned why 5 weeks later, after school residential, parent sent photos in of child's depleted hairline, non existent eyebrows and lack of eyelashes?

You made an emergency referral to Social Services citing "Safeguarding concerns" when 3 weeks later parent emailed to say child has had 2 panic attacks at weekend, said she wanted to die and would not be in school because you were seeking an urgent private apointment with a Paediatrician? Because child had been on the CAMHS waiting list for 2.5 years and wasnt severe enough to warrant any input?

You never noticed how Mum stopped talking to anyone at school, about anything? You never noticed how mum sat at the back, nearest the door, at school assemblies? You never noticed the bags under Mum's eyes? Until she broke down in the "Way Forwards Meeting" when you told her child must come to school every day because attendance was really important?

So, you never noticed?

Yet you were concerned enough to contact the Multi Agency Safeguarding Hub on a number of occasions that term?

And you could find the time to ring them every other day to ask them for an update?

And you could arrange meetings with professionals but not inform or involve mum because you were "concerned about her mental health?"

So, you saw a silent mum, at the classroom door, every single day. You saw the child for 6.5 hours per day, 5 days a week. But you didn't notice. Until child became too ill to attend school.

Then you found the time to invite yourselves, 2 members of staff at a time, round to my house, my child's safe place, on less than 24hours notice because you needed to do a welfare check.

Yeah, you never noticed...

Well, I'm glad you haven't had to notice the flowers on the grave....

I'm glad that I stopped my child attending school that term. I'm relieved that the Government ordered the schools to shut. I'm glad that my child wasn't classed as vulnerable. I'm glad I am not a key worker. I am glad my child doesn't have an EHCP (yet). I'm glad my child doesn't have a social worker. I'm glad the social worker decided there were "no safeguarding concerns".

I'm glad my child is still alive. I'm glad we can enjoy another day, together.

And you never noticed....

ANONYMOUS

Shared, anonymously with The Author's Permission  

#secretparent

@AutisticGirls_

But they have no problems in School: Autistic Masking The Hidden Trauma of Our Children

Guest blog by Jodie Smitten

As a Post Grad student I have recently submitted a 5000 word assignment on this subject, so I will be attempting to avoid going in quite so deep and stick to the main points…not an easy task when I feel so passionately about this topic!

I know there will be many parents that will read this and learn nothing new. For many children and their families this is their everyday lived experience; feeling misunderstood, trapped, unsupported, and isolated. Alongside this many families are fighting for help for their child who is struggling with mental ill health as a result of masking.

But this piece isn’t aimed at those families, it’s FOR these families. Raising awareness of masking amongst professionals is vital for the mental well-being of our autistic children. The aim is to save children from distress, save children from trauma and save lives.

Masking, also known as social camouflaging is the ‘performance’ put on by an autistic person in order to ‘fit in’ with surrounding people, often by supressing autistic tendencies or hiding the difficulties they experience in the non-autistic world.

So how can this look?

A person who; is suppressing excited jumping and flapping, doesn’t voice the distress caused by the lights being too bright, mimics the fashion, speech and interests of a peer or continues a conversation about football despite being bored senseless! It can look like a child who appears calm and happy all day at school, but the minute they meet the safety of Mum or Dad ‘lift the lid’ of their emotions and spiral into a meltdown, it can be the child who has numerous meltdowns in the morning over socks feeling wrong or hair having too many bumps in it, yet the second they cross through the school gates appears to ‘click into character’ and appear ‘fine’ and maintain that façade for yet another day. 

Now I’m sure many non-autistics reading this may well think ‘well that’s not so unusual, we all do that from time to time’ and yes that’s absolutely correct. But for the autistic person the extent of masking is deeper and more labour intensive than that of the non-autistic. It involves intense focus and holding back what is natural, overriding ALL of one’s true self.

So, why am I so concerned with autistic masking?

Simply put masking hinders autistic life, actually that’s an understatement. It hinders access to assessment and identification, it hinders access to adjustments and support in education and it hinders others (including parents) understanding of a child’s needs and therefore a child won’t have adjustments made in any of their environments. Now if we consider Beardon’s (2019) ‘golden equation’ autism + environment = outcome…… an autistic child with no environmental adjustments or support will not be able to reach potential and the outcome is dismal to say the least.  In short masking causes high levels of stress and exhaustion, autistic burn out and mental health difficulties (Hull, et al., 2017; Cage, Monaco & Newell, 2018).

So if masking is so bad for self, why would anyone do it? Survival is the simplest answer. Protection from being picked on by peers, protection from adults ridiculing, and sometimes from their own parents who know no better. Yes, I’m guilty of trying to insist my child just ‘wears the blinking socks’ before realising she was autistic and wasn’t just being a ‘fuss pot’. Many autistic children learn from an incredibly young age that it’s easier to just try and ‘fit in’ and ‘not make a fuss’ if you don’t want any unwanted negative attention. If I had a pound for every time someone told my 4 year old he ‘needs to get his hair cut’ I would be rich. These aren’t nasty people, these are just fleeting comments to them. Little do they know that he is petrified of having his hair cut and even sitting in the barber’s chair is enough to cause him to shake and drop his bottom lip. Why should he be subjected to that just to ‘fit in’? But sadly for many children the comments and ridicule become too much and they buckle and submit to the ‘norm’. 

So Let me break my concerns about masking down:

Masking hinders assessment and identification

You take your child to the GP, you tell the GP you think your child may have autism, the GP takes a look at your child who is dutifully sat there, asks them a few questions which they answer. The GP then states he needs ‘evidence’ of difficulties in school, (and yes some professionals will still state that if a child is autistic it will ‘show’ in all environments!) The school say they have no ‘issues’ and that your child is fine is school. And there you have it, you can’t even get a referral for the assessment pathway let alone an identification! But let’s pretend you make it that far and your child is offered an assessment, your child is then encouraged into a room with unknown people to answer a set of questions. As these people are unfamiliar to your child and your child is keen to please your child masks, acting perfectly non-autistic. The second you get back to the car your child shuts down or meltdowns from exhaustion. The result; no identification of autism and a distressed child…. brilliant!

Identification of autism is important on so many levels, it is summed up perfectly (and much better than I could write!!) by Zwanenberg

‘As without a diagnosis this can make so many areas of life difficult, distressing and bewildering for the undiagnosed person. This can result in difficult behaviours, social isolation and young people who do not attain their best ability in school. Once diagnosed, the young person can understand themselves better and realise that are not alone in the way they feel. Their parents and the professionals working with them can all learn how best to help them. The right services can be accessed and adaptations can be put into place in the educational setting. A diagnosis can prevent so much distress as the child develops and can stop further psychiatric illnesses developing’

Self- identity and ‘finding your tribe’ are so so important for our autistic children. If a child can find her tribe (those she feels connected and at ease with) then they are not burdened with social differences or a lack of understanding about their needs. Research shows that social ‘deficits’ aren’t apparent between two autistic people! Yes that’s right, the deficit isn’t necessarily a ‘defect’ of the autistic individual but actually the non-autistic person has a deficit in autistic social skills! I am a big advocate for teaching non-autistic people about how autistic prefer to communicate rather than expecting autistics to learn ‘social skills’.

The very sad fact is that often children aren’t actually identified as autistic until that mask drops. The mask becomes too heavy to bear any longer, the long term suppression has caused mental ill health, severe anxiety, incredibly high levels of stress and the mask tumbles dramatically. Your child didn’t make it to the car and had a gigantic meltdown at school, your child couldn’t manage the monstrous amount of energy needed each day to get into school with a smile on their face and they hit a wall and point blank refused to go anymore, your child started to self-harm, your child attempted to take her own life. Even then often children are ‘treated’ using a mental health intervention! You are told its anxiety, depression and your child is prescribed drugs or even worse given a course of CBT! You are told that by keeping her home you are ‘feeding’ her anxiety and that avoidance will only make it worse! This is autistic burnout. If you don’t know about autistic burnout please look it up and read some of the amazing blogs by autistic adults such as Kieran Rose (The Autistic Advocate).

Anyway….. I digress. At this point your child’s autism may be recognised. The problem with this is when identification comes at a point where a child is rock bottom, they can misinterpret symptoms of a secondary mental health condition as autism. This results in many children rejecting their autistic identity and/or despising it. Heppel (2019, pp21) who was identified late in life, described this as ‘I have to separate the autism itself from the wounds that have been inflicted by people over the years- some well-meaning, some not - in response to the way my autism expresses itself’. Positive autistic self-identity is necessary for good mental health, (Cooper, Smith & Russell 2017).

Identification should not and must not be based on outward struggles. Masking must be understood by all, parents themselves but also the gatekeepers to assessments (Teachers, SENCo’s, GPs, health visitors etc.) and those that assess for autism. The Lorna Wing centre do autism assessments that last all day, during breaks when away from unfamiliar eyes the child is being observed. As a child is in clinic all day it is likely that by the end of the day the mask can slip. This gives the clinicians a good opportunity to witness a child unmasked. Equally during my daughter’s assessment we ensured that she was as comfortable as possible. The clinicians had details of my daughter’s special interests which they used to engage her and make her feel at ease. My daughter had seen pictures of the clinicians and she met them in a familiar and known place. The assessment was conversational in style and she doodled as she talked and showed them pictures of her pets. She was made to feel comfortable enough to un- mask and speak her truths. These clinicians heard about aspects of my daughter’s inner world that even I wasn’t aware of!

Parent blaming

Ok so your child is ‘perfect’ at school, but at home you have a child who is distressed, explosive and seems unable to control their anger.  This is the Jekyll and Hyde phenomenon (Attwood, 2009). When you approach school they are shocked by the child you are describing, when you speak with the GP they too don’t believe that the child sat still and quiet in their surgery can be the same one you are describing. Not only that, but because they behave well at school, the issue must lie at home……with the parents! Parents are advised to go on a parenting course, aimed at teaching parents to have tighter boundaries, be more consistent and regain control! This approach is damaging for an autistic child.

If a parent protests this and makes several visits to the GP, insists on second opinion and fiercely refutes that her child difficulties are down to her parenting and demands autism assessments they are deemed to be trying to ‘label their child’. Or in more extreme case accused of fabricating illness (known as FII, Fabricating or inducing illness). Particularly at risk are autistic parents (including those not identified as autistic).  According to the NHS a child is more at risk of FII if the mother has borderline personality disorder, which a common misdiagnosis associated with autism (Pilling, Baron-Cohen, Megnin-Viggars, Lee, Taylor, 2012). The NICE Guidelines (Child maltreatment: when to suspect maltreatment in under 19’s, 1.2.12) states presentations that may indicate FII, some of which raise concerns if we consider autistic masking, such as ‘symptoms and signs only appear when the parent is present’, ‘reported symptoms are only observed by the parent’. The National Health Service (2019) suggest considering FII when ‘the parent has good medical knowledge’, which considering many autistic parents knowledge of autism will be good, this is a concern. All of these ‘red flags’ could be attributed to a child that masks. Children have been known to be wrongly removed from parents, I know from my role that some parents are fearful of being deemed over anxious and/or neurotic by professionals when they try to fight for their child.

 Masking hinders in school adjustments and support

So without identification and without any signs of difficulty (due to masking) getting adjustments in school can take some fighting (not in all schools, I do work alongside some amazing SENCo’s) but sadly not every child and family has a ‘me’ and not all schools are as aware and supportive.

If your child does have a formal identification of autism, masking can still hinder access to support. Again, if a school doesn’t ‘see’ any unmet need or difficulties and/or the child isn’t causing any disruption or upset to others then why would they (if they aren’t aware of masking that is!). As well as denied adjustments, children are denied access to additional services such as advisory teachers or educational psychologists (that schools are gatekeepers to).

In my role I have witnessed schools having the attitude ‘we can’t refer because we don’t have any issues’, ‘she’s fine here so it’s the parent’s problem’ and ‘we don’t actually believe she has autism’.

I truly believe that every autistic child should have a support plan. This should be developed in collaboration with parents, the child and a trusted adult in school. This should be based on a child’s differences, difficulties and presentation in ALL settings and not purely based on how they appear in school.

Without this a child that masks will burnout. Very often these children become our school refuses and develop mental ill health. Once a child hits that wall and refuses or becomes burnt out its incredibly difficult for them to return. Trust is lost, trauma is long lasting and recharge is a long process. The support has to be there from the beginning. Success from the start, not intervene when things start to fail.

And finally…….

Ok so other than poor self-identity due to delayed assessment and/or identification, lack of understanding of self, no tribe, unmet needs in school, autistic burnout, inappropriate parental responses to needs or parents being deemed neurotic the other factor that risks the mental health of an autistic child that masks (just in case you needed additional ammunition!!) lies with others mis-perception of a child’s masking behaviour!

I have experienced people who deem masking behaviour as a child being ‘manipulative’.  Implying that the discrepancies in behaviours between settings and between care givers is down to a child trying to ‘get their own way’. This can lead to the mistreatment of a child. I have experienced those who disbelieve parents’ concerns and resent any ‘special’ treatment a child maybe receiving. I reframe ‘manipulation’ as a child ensuring their needs are met to prevent trauma. Poe (2019) writes about a teacher who deemed her manipulative. During her time in secondary school Poe was emotionally abused by this adult to a horrific level due to the teacher’s incorrect beliefs about Poe’s presentation. Professionals having a greater depth of knowledge of masking would increase understanding and encourage a more open dialogue between parents and professionals. 

What else needs to change……

All professionals working with children need to be aware of masking, but not only aware but a deep understanding of the depth of it, the reasons for it and how to support a child in feeling safe enough  to share their inner self.

Our children need to be allowed to say ‘no’ without the fear of punishment or ridicule. How often when a child doesn’t want to kiss grandma or share with a friend do we insist or persecute them for going against others wishes. How can our children learn the essential self-care needed to manage being autistic in a non-autistic world if we don’t teach them to say ‘no’ when it all feels too much! As an adult people often preach ‘self-care’ to me, I don’t even what my own self-care looks like! We have to advocate and teach our children this through validating and accepting when they express themselves.

Behaviour policies in schools go against self-advocacy. Many children I have met have a deep fear or phobia of being singled out or told off in school, therefore they will stick to the rules even if this is to their own detriment. Just recently I read a school policy that insisted children showed ‘good listening behaviour’ this involved sitting still, looking at the teacher and hands on laps! I work with many incredibly bright and able children, yet if they are required to follow through with these 3 demands they have little mental energy left to actually process what is being said to them. Yet they are too scared to act out their natural neurology of fiddling and looking away from people while concentrating as this will result in being seen to ‘break the rules’ or being ‘naughty’ with terrifying implications i.e. being told off.

The Sunflower lanyard has been helpful on our journey, my daughter uses hers and feels that when wearing it people don’t judge her negatively for her differences. She feels it offers her a green card to act herself. Autistic behaviours needs to be understood and accepted, the responsibility lies with every adult. Educate your children, educate yourself! All children should be taught specifically about difference. Diversity makes up the amazingly rich tapestry of life and of humans. No child should feel less for who they are, no child should be denied identification and expression of their true self.

A bit about me!

I am a parent to 3 children, 2 goats, 6 hens, a gecko and a dog.

I am also an independent autism specialist based in Wiltshire. I support families on their autism journey from assessment, identification, advocating for school adjustments, advising on parenting approaches and supporting the emotional literacy of autistic children. I also offer training to schools. Working alongside families on their journey is an absolute privilege. Every child I meet teaches me something new. Autism is my special interest and I am passionate about my role.

Jodie

jodie.smitten@behaviourservices.co.uk

https://m.facebook.com/Childrens-Behaviour-Support-Wiltshire-606003673066792/?ref=bookmarks

About masking autism and why I think we should think past it

Guest blog post by Rachel Tenacious

This morning as often happens I saw a poster/meme about masking and what do we know about it. People are so much more knowledgeable about this part of many people's autism but yet we don’t seem to be moving forward in solving the problems caused by it.

These are just my thoughts as an autistic person who "masks" and the parent of an autistic person who "masks".

The thing is I don’t actually believe H does mask, I can see the struggles, the stress, the anxiety but often others can't, won't, don't!

I think we need to move beyond thinking about masking as a thing and look at the way we view the person we are thinking about:

Does the person have a diagnosis of autism?

What do we know about them?

Have we been told what signs of stress to look out for?

If the answer to my first question is yes then I want you to stop thinking about that person in terms of masking and start thinking about what you can do to support them.

My point is that all people with autism need support in school, at work etc whether they mask or not and by saying we can’t help them because they are masking is the same as blaming them for not asking for help.

I have a perfect although hopefully extreme example of where schools can make a critical error in terms of supporting a child with autism. My child's school didn’t support our appeal for her to be statemented in fact they were adamant that she was "fine" in school and to prove their point they made a video of H doing drama!

The video showed H rocking from foot to foot while standing in a circle of other children, twisting her hands, licking her lips and rubbing her face with the sleeve of her jumper [something which had caused her to draw blood in the past, you wouldn't believe the harm that can be done by acrylic, luckily we were able to buy 100% cotton jumpers for this school]. Yet H was taking part in in the lesson and was engaged. Apparently that was enough for the school. It wasn’t for us and thankfully not for the tribunal either who didn't view the video on the day of the hearing but had clearly watched it and had also noted the clear evidence of anxiety.

Sharing and understanding information about what anxiety looks like in each individual with autism or suspected autism is massively important. So many of our children are being failed by the system, the stats for the number of autistic people out of school or work make very depressing reading and yet with some simple skills eg listening and looking carefully there could be a way forward.

I have seen evidence that this is possible, H after three years of home ed to recover from the trauma suffered in school has tentatively dipped a toe into the world of college. She is doing eight hours a week and has a 1:1 LSA. This LSA has already shown after seven sessions that she is intuitive enough to spot the signs of stress in H. Yes it was subtle, shuffling around in her chair, sighing, pulling at her t shirt but it was noticed. The LSA was uncertain what action to take but that doesn’t matter at this time, its very early days and no one knows what action to take really. The fact is that by coming and telling me at the end of the session that there had been a noticeable difference in body language I was able to get some more detail later on on the evening and can begin to help to solve the problem [which turned out to be a noisy fan on a laptop that was preventing H from being invisible and which she has become hyper focussed on.] In the old days that would have been missed and H would have quite likely school refused the next day but here we are well on the way to fixing the fan and at any rate talking about other options.

It is so important to me that we stop almost blaming these children, young people and adults for not letting us see how much they are struggling. They do this because they want to fit in, they want to do well and its hard work. We need to give them permission to receive help, we need to help them to understand that being helped is a positive thing and that they don’t need to hide their autism anymore.

 Rachel Tenacious 

[A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15.

We removed H from the education system in 2015 after she had what we now know as an autistic burn-out.

The school system didn’t suit H at all but home ed has been amazing.

Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.]

But she looks fine when she's here!

How many times have I heard this yet the parents KNOW their child is anxious?! Maybe they've had to drag them kicking and screaming into school, maybe the child has tried to self harm or attacks their parents on a regular basis. I saw this on twitter and it sums up how anxiety is not one thing. We don't always see it. A child can mask: hide their issues at school but all the time building the pressure til they get to the save haven of home or maybe just the carpark in some cases. It's called the 'delayed effect'.

What anxiety looks and feels like.#anxiety #signs #mentalhealth #beaware #support pic.twitter.com/JZqxIYH6Dm

— SCS Training&Therapy (@SCStrainingLtd) March 3, 2018

It's not right just to say, 'it's parenting,' We need to listen, we need a team approach not 'them' vs 'us'.

Please help spread this word as it's a HUGE problem and children's mental health depends on more people being aware that anxiety does not have just one 'look'.