The Chairmum

16/11/2022

I often hear people say that they don't like labels? Or that it will make them feel different or othered but it can give people a sense of belonging. Of not being alone. It can open the door to understanding yourself and be a path to self acceptance, self love and pride.

This episode of Room 5 interviewing author Holly Smale was great and well worth a listen. Here are some bits that resonated most with me.

"From an emotional perspective it's helped me to love myself a bit more and to feel much less shame which is so important because I don't think people can quite understand what it feels like to have your whole identity, everything that you are ripped apart and dissected and commented on everyday since you are tiny." Holly Smale, author of Geek Girl

I liked Holly's analogy where she likened late diagnosis to thinking you're a duck your whole life and everyone telling you you're a rubbish duck. And then finding out you're a frog and you have a moment of revelation where you're like ahh of course. It doesn't matter that I can't do those things because I'm really good at being a frog I'm just not good at being a duck.

When she was asked in the interview, by a young autistic girl, if she thought it was good to be diagnosed earlier if you're autistic? I thought her answer was spot on...

Yes because then you know who you are and there isn't this constant confusion about it...and if I'm having a really difficult situation instead of thinking "what's wrong with me?" I think this isn't something I'm super strong at but I am good at other things.

On being diagnosed as autistic at 39

03/10/2022

I’m a trauma therapist and I work with families of children who are not fine at school. The more stories I hear, the more I am concerned that this area is full of psychological techniques being applied in ways which, unfortunately, can make things worse rather than better.

It’s a basic tenet of trauma therapy that a traumatic event needs to be over before a person is ready to process and recover from what happened to them. They need to be safe. If they aren’t safe, then the first priority should be changing the circumstances to make sure they are safe. That’s because there is nothing wrong with a person feeling highly distressed when the situation that they are in is dangerous to them. It would be far more surprising (and concerning) if they were calm. Fiddling whilst Rome burns, we might say.

I use the metaphor of the burning house to explain this to people I work with. If your house is burning down, and you go running to tell someone, you’re going to be frightened and distressed. Maybe you shout at them ‘My house is burning down! Help me!’. If their response is to tell you to quieten down and concentrate on your breathing and that they’re sure it’s not that bad, you’ll get more upset and probably angry. You know your house is burning down! You need actual help, right now, not a breathing exercise! They aren’t listening to you! You really need them to know how bad it is and they don’t get it. You’ll shout louder, or maybe you’ll push past them to get to someone else who does understand. They might get angry with you then because they’ll say you’re being aggressive and ignoring them.

Your fear and distress as your house burns isn’t a sign of you having an emotional problem, it’s a sign that your survival system is acting as it should, to keep you safe. That’s what it’s there for. It gets triggered when we are in dangerous situations. Of course, it does also make mistakes sometimes – perhaps you’ve experienced a house fire in the past, and when the smoke alarm goes off in the house your survival system gets triggered even though it’s just the toaster. Then we might want to intervene to help you feel safe again.

With children, there’s a tendency to assume that their distress, particularly about school, is always an emotional mistake. The assumption is that they are feeling the way they do in error, like running out of the house when the smoke alarm goes off. This means that the solutions offered are calming strategies or anxiety management – or even being told not to be so silly, just join in and stop making a fuss. Adults do this with good intentions. We want to show them that the world isn’t as scary as they think it is. We don’t dislike the things they dislike, and so we think that if they understood the world as we do, they would be fine. To this end, we tell them that they are wrong to feel the way they do.

What this means is that when child is distressed about school, they are offered emotional regulation strategies. It’s assumed that the school is safe and the right place for them to be, and once they learn that, the better it will be for everyone. The solution to the problem (from this perspective) is for the child to stop feeling distressed about school, and then everyone will be happy.

But school isn’t always okay, and one person’s experience of a school isn’t the same as another. For some young people, their school feels like a hostile environment, day after day. They find things like the pressure and comparisons, the lack of privacy, the frequent transitions, the playground and the way that people talk to each other extremely difficult, and that doesn’t get better by doing it more. This doesn’t have to be true for everyone in the school to be true for some young people. One person’s happy place can be another person’s nightmare (look, some people climb very high buildings for fun!). Some young people feel unsafe and unhappy at school, but everyone is telling them that the problem is them and if they just did some more mindfulness or deep breathing, it would all be okay. This is really confusing for them.

For them, it’s like the house is burning down. They are highly distressed, they don’t feel safe, and being offered calming strategies feels like they aren’t being listened to. Not only will they not work, but they also have the potential to make things worse, because they tell the child that the problem is them.

That isn’t to say there isn’t a place for calming techniques - but it’s when the problems have been listened to, acknowledged and changes have been made. It’s when the fire has been put out. Now the house isn’t burning and the immediate danger is over, so we might be able to take some deep breaths and regroup. At that point, we might need to calm ourselves down so we are ready to rebuild. We might be ready to use the Thera-putty, or the breathing exercises, or a guided relaxation. But they won’t help put the fire out. For that, we need water and a fire engine.

Words: Dr Naomi Fisher
Illustration: Missing The Mark

https://naomicfisher.substack.com/

03/08/2022

Let's talk about autonomy. When my 4 year old daughter said she wanted short hair like daddies we cut it into a bob with a side fringe (hoping it would appease her). When she insisted she wanted it short like daddies we let her. Because it's just hair and it's her hair.

Yes we explained once you've cut it off you can't put it back and have to wait for it to grow. We also explained that she'd likely feel a little colder as it was winter. And that some people may think that she looks a little boyish. She took it all in. She scrolled through photos of short hair for girls and boys and she knew what she wanted.

When we got to the hairdresser they were a little apprehensive. What if she didn't like it or changed her mind part way through the cut? We asked our daughter again and she knew her own mind. The hairdresser reluctantly went ahead and guess what? My daughter loved it. The hairdresser loved it and we loved it to.

It may her look older. It changed her look completely. No more opportunities to brush her long hair or style it (not that she wanted us to anyway - part if her reason for wanting it cut). But it was undoubtedly her decision and she chose her own look and style.

It's just hair but a good haircut that you love changes how you feel about yourself. It is part of your identity and how others see you. Why did it matter to me what my child's hair looked like? I want my children to know themselves and be confident to express themselves too. To take risks and try things out for themselves. I want them to be comfortable being them. How could I do this if I didn't let them make decisions on how they look.

And it's only hair. It will grow and the look on her face, pleased as punch with her new hair, was priceless. She has never complained. Only had it trimmed once since and is now freestyling with a growing out short hairdo. I can't wait to see what she chooses next.

16/06/2022

Sonning to this

They leave you before they leave…

Having been in for the past 2 years we were worried that O was a little behind in the socialising department. We’d had no, ‘You treat this house like a hotel!’ no slamming doors, no, ‘You’ve ruined my life!’ and no wondering where on earth he was and with whom.

Our run-up to 18 has been quite a slow one thanks to the pandemic.

Then the country reopened, and we thought he’d be off, but he was quite settled in his routine until one day when he asked if he could go out and we said, ‘You’re an adult now, you don’t have to ask us if you want to go out.’

And he went out and did it again.

He stayed out later, and we had to have the, ‘It’s a college night and yes you’re an adult but when you get back late we’re in bed and the dog barks when you come in late,’ conversation. It felt very teenagery and real and suddenly how he was supposed to be.

He’s out most nights now and we have to ask if he’s home for tea even though we’ve never had too before. Luckily, we have 2 other sons who are ravenous at the moment (both growing) so food is never left on the shelf for longer than 20 minutes so whole meals certainly don’t go to waste.

They leave you before they actually leave you.

Little by little they break away. First up to their rooms, then out with their friends and then the ability to drive means they can literally drive away and the arrival of 18 lets them drive away whenever they want.

He’s slowly leaving.

This is the long goodbye.

It’s no longer that he listens to his friends more and us less or that he rolls his eyes but then does what we’ve asked. This is the time where his opinions are truly his own and connection has to be worked at rather than taken for granted. I’m arranging to spend time with him in a way that I never had to before. We have to find the common interest, the common ground and make so much more of an effort than we've ever needed to.

If his plans cone to fruition he will leave in the Autumn and yes, he will come back but I don’t think he’ll ever live full time with us again.

This is the long goodbye to childhood. It’s already in the distance turning round and silently waving me goodbye…

31/05/2022

Only 12% of countries start school at 5 years old and they are all ex-members of the British Empire...Many parents aren't that they can defer their child's school start until the term after they turn 5 (or even Year 1 if their birthday is 1st April-31st August). Many parents don't realise that they don't have to register their child for school at all. They can elect to Home Educate. Parents are made to feel that if their child doesn't start school at 4 years old in Reception then they will miss out on their last real opportunity to "play" at school, on friendships and they will be behind in their learning.

The global Covid-19 pandemic was a missed opportunity to reform our education system. Instead of listening to current research, learning from other countries who start school later (often 6 or even 7 years old) we think our children need to "catch up on lose learning ", work even harder to be ready for Reception/ Year 1, SATS, Secondary school etc. They never get a chance to simply be where they are. To become who they are. To learn at their own pace. To respond to what they need to thrive.

This is a short sighted failing of our Government and without a major cultural shift in society I don't see it changing any time soon.

Ready for School
Our school starting age in New Zealand is really an historical accident, or more probably accurately, an historical precedent. Children start school at five even though they don’t have to start until they are six. While more parents are taking the start-at-6 option, most don’t because starting at six not considered 'normal' in our culture. It takes courage to swim upstream in order to change things for the good of our children. Those who are not so keen on change will argue for the status quo, school at five. Those who are looking at aligning what the education system offers to child development will argue for pushing back abstract symbolic learning (reading, writing, mathematics) until 6 or 7, as the Scottish Education Authorities are doing with the introduction of their “Upstart” programme. Blessings on all of the parents whose ‘education activism’ will make it easier for other parents to look out for their children’s wellbeing.

19/05/2022

Giving children the opportunity to feel their emotions and not see some as shameful, embarrassing or unacceptable helps their development. It is part of their journey to understand themselves and process their emotions in an effective way. It helps them to understand that they are not their emotions, that emotions come and go and that they can control their emotional responses. Having the space to feel, without judgement, is so valuable. So adults get comfortable with the uncomfortable because it could be the difference that makes the difference when your child is an adult.

I love this picture. Two totally calm men are waiting for the tantrum of the little girl to pass. The two men are the father and grandfather of the two-year-old girl, who lay on the floor and started Throwing a tantrum in the middle of the mall.
Neither of the men loses patience or yells at her. They just wait quietly. They have decided to not give her what she wants – when it doesn’t make sense. Yet they are letting her express her emotions, in this case her anger, at not getting what she wants.
Nobody feels embarrassed about the show the little girl is putting on.
The father's own words when posting this photo explain everything:
This post is about one thing and just the one thing – Get comfortable in the uncomfortable.
There are no perfect parents, but one thing my parents taught me was not being a parent depending on what others think. My dad always let me feel what I needed to feel, even if it was in public and embarrassing. I don't remember him telling me: 'You're embarrassing me! 'o' Don't cry! '. It wasn't until recently that I realized how important it was for my own emotional development. Our kids are learning and processing so much information and they don't know what to do with all these new feelings that come up.""
Let us learn to be comfortable in the uncomfortable. Let us learn to deal with our children's tantrums, with patience and tranquility. Children are children.
Credit: Justin Baldoni

17/05/2022

I found this so helpful when we electively home educated. And even more interesting is that a well known piece of research by John Carroll in the 1960s discovered that children in class spend at most 50% of their time "on task", i.e. actually engaged with the learning activity. So you can cut that 702 hours in half; 351. Less than an hour per day is actually spent fully engaged in learning! I'll just leave that there.

28/04/2022

While we celebrate Autism Acceptance Month, groups remain underdiagnosed and under-celebrated within the Autism community. Thank you to for creating this guide to shed awareness about the under-identification of autistic girls.

“This week I’m looking at cis girls & women. Girls & women go undiagnosed at alarming rates. This is due to several reasons: the fact diagnostic instruments are normed off boys, the majority of research has been conducted on boys, & negative stereotypes & cultural myths that perpetuate the idea that autism is a “boys” condition. ⁠
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💝 A recent study suggests we are missing autistic girls at alarming rates. While the often-cited male-to-female autism ratio of 4:1, McCrossin’s (2022) mathematical projections, which take into consideration diagnostic bias, suggest the true male-to-female ratio is 3:4 with 80% of autistic girls remaining undiagnosed by the age of 18. ⁠
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💝 Emergent research also suggests autism presents in different regions of the brain. Supekar et al., 2022 have observed sex-specific brain differences present between autistic females and males. Girls are more likely to experience differences in regions of the brain that affect fine motor skills, executive functioning, & emotional regulation, while they often show less social-communication differences (Cauvet et al., 2020; Jack et al., 2021; Supekar et al., 2022). ⁠
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💝 Women & girls more likely to go undetected as their special interests more likely to culturally blend in as they may be interested in humanitarianism, animals, people, pop-culture (bands, popular movies etc.) (Hull et al., 2020). ⁠
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💝 Less likely to present with the same social-communication differences & more likely to mask their differences & socially blend in (although they often experience relationship difficulties which make maintaining friendships difficult (Hull et al., 2020). ⁠
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💝 Women & girls more likely to experience victimization from peers and others and are more likely to have co-occurring internalization disorders & PTSD (Hull et al., 2020). ⁠
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💝 Increased risk of co-occurring physical conditions such as endocrine & reproductive health conditions, epilepsy, autoimmune conditions, neurological, gastrointestinal, nutritional, and metabolic conditions) (Kassee et al., 2020)”

Repost from

03/04/2022

If you missed the PDA Space Summit you still have time to access the webinsr recordings. If you purchase before 4th April you get a years access for JUST £49 (usually price £99). There are over 30 speakers talking about Pathalogical Demand Avoidance.

...has always been to give every person the opportunity and the space to understand and share their experiences and knowledge of Pathological Demand Avoidance, an element of the Autism Spectrum Profile that is frequently misunderstood, overlooked and ignored. 

17/03/2022

She's not ignoring you. She's exhausted. I'm pretty sure many of us can relate.

14/03/2022

So excited to see that the amazing Dogs for Good - UK are one of The Maths Factor chosen charities. My daughter LOVED helping to raise funds for this cause this morning. Amongst their extensive services they offer Family Workshop courses online providing parents of autistic children with the advice and long-term support needed for choosing and training a dog to benefit the whole family. It is amazing for anyone with a ASD child who has a dog or is considering getting one. https://www.dogsforgood.org/how-we-help/family-dog/

And The Maths Factor is a big hit in our house. I highly recommend for children 4-12 years old. Carol Vorderman is so good at explaining the topics and giving tips. And the software is varied, interesting and easy to use. There are daily lessons, games, After School Clubs, Seasonal Clubs (where you can support charities), challenges and so much more.

https://www.themathsfactor.com/home/marble-pachinko/

10/03/2022

Absolutely this. Keep on keeping on. There is no magic fix, no one who will save the day. There is only here and now. You in this moment. You can control your reactions but you can't control others. I am certainly at a stage in life where practising radical acceptance is my bag. Messy, frustrating, draining, infuriating, exhausting and wonderful all at once. And completely mine.

Our coparenting meetings have changed significantly over the years.

We used to make lists and plans, routines and schedules.

Then, as life became busier, sometimes trickier, and that little bit more demanding of our time and energy, we knew we had to truly change things up and let a lot of stuff go.

Yesterday we sat at the table across from one another and laughed, sighed, rolled our eyes and sat back with our arms folded, thinking.

We said a whole lot of "I know..I know" with deep empathy and compassion for ourselves and our children.

We went over the latest going ons with our children, the great parts, the "I have no idea how to handle this" parts, all of it.

We used to spend longer coming up with potential solutions, but these days it's quick, and it's normally the same answer..

"We need to really knuckle down hard on looking after ourselves."

This looks really, really different for each of us.

He does his thing, I do mine.

I spend many of my work days sleeping at the moment, or writing, talking to friends, or in therapy, processing my "stuff".

He likes to lock himself in a room with headphones, gaming.

Paying attention to what we put into our bodies, how much we're moving, how connected we are with our passions and interests, focusing solely on our wellbeing.

When I'm well, when I'm rested, I'm calm and I'm far more capable of managing and accepting left of field situations and circumstances within my family.

The above is not always possible, however, and there are periods where I find myself in dire straits, having meltdown after meltdown, crying over the drop of a hat and waking up with excessive anxiety.

Sometimes I can get away, sometimes I can't.

But it's all data. It helps me to understand myself better and to know what I need, or what I can offer myself in terms of enough to get by until the periods when I can give myself more.

We no longer pose questions to ourselves or one another such as "How can we get our child to..*insert thing here*", or "What will the consequence be when they..*insert thing here*".

Instead, it's centred on us.

"How can I better prepare myself to cope when..*insert thing here* happens?"

This is radical acceptance.

I arm myself for whatever is our normal at any given moment in time.

Am I cleaning faeces, food and all sorts of various bits and bobs up often?

Yeah. Have been for years.

Am I constantly advocating, appealing, communicating, fighting for more funding, more support, more understanding?

Often.

Am I managing sibling aggression?

Yeah.

Am I being hit and hurt?

Sometimes, yep. I can't imagine the frustration of having thoughts, feelings and dreams and not yet being able to communicate them in a way that is accessible and comfortable. We're working on it, always. But sometimes their body is their only tool of communication.

Is parenting hard?

Yeah.

Is being autistic and parenting hard?

S**t yes. Triggering, exhausting, loud, smelly, threat response inducing..all of that.

And it's wonderful and beautiful and the most incredible experience and the only thing in my life I've incessantly worked on myself to be better and better at.

The greatest gift we can offer our children, the fastest route to them having a sense of safety and security is looking after ourselves.

Those of us in advocacy, those of us speaking publicly about parenting, raising and loving neurodivergent children haven't cracked some mysterious code on a perceived deficit based experience and lifestyle and made it better or more neuronormative.

We practice radical acceptance. I mean, is it even radical to say we just accept and love our own children unconditionally?

When life gets super challenging in our family, I ask myself "If this was to be our new normal from hereon, what would I set in place for myself and my family in order to find calm amongst the chaos?" and I get to work.

I might go for a drive and scream at the top of my lungs.

I might write it out. I might rage in therapy. I might text someone and tell them "This is FU***NG hard".

I might ask the childrens' Dad to step in so I can step out.

I might sit, glued to a screen for hours on end, disconnected from my children and my feelings.

On my own, I might have a stern chat with myself over leaving the house alone and just being with my children with a cup of tea.

I might pack us all up into the car and go through the car wash for the sensory experience.

We might go through a drive thru somewhere and order a Big Mac.

We might go for a walk.

I might throw headphones on or put on some music.

I might start kicking off loud, jumping up and down and creating my own chaos to break the loop and reset the energy in the home.

Being in community in a way that works for me is so important. Sharing space with families who share similar attitudes helps profoundly.

It's okay for parenting to be hard. That's totally normal.

Blaming our children for it, not helpful. Grieving the child we believe we should have had? A waste of life. There is no other child, there's the one right in front of us who is completely whole and beautiful and meant to be.

My children meet me where I'm at.

Always.

The greatest gift we can offer our children is to look after ourselves.
KF x

Image is a black and white photograph of Kristy in her thirties, laying in a hammock with one of her children as a baby. Kristy is looking at the camera and smiling, her baby has their eyes closed and their finger in their mouth with a smile.