Our eldest is no longer a child, he is a young adult who is trying to find his way in the world, and yet the problem and issues he has had in education over the last 21 years since he started at a day nursery still plague him, affect him and make any kind of learning miserable.

We now find ourselves back to a point where going to college (day release) has triggered the biggest panic attack for years, and he really can’t face going back on this course. He is looking at other courses, and doesn’t want education to ‘beat’ him, but bad memories have been made on this course, and he can’t see a way back.

In many ways, this is similar to my previous blog, talking about the Intense World Syndrome and a heightened fear response and lowered fear extinction in people with ASD, and as there is a lot of consensus out there that there are overlaps between many of the neurodiverse conditions, this is definitely a possibility, or a contributing factor.

What is compounding this, however, is a fear of what might happen that is driven by real, traumatic memories and experiences rather than heightened fear as discussed before. There is a school of thought that children with learning barriers, especially ADHD, which also increases the risk of depression, anxiety and other mental health conditions, actually develop a form of PTSD (good link here) which means than any small repeat of any of the bad experiences from their past could trigger an unexpectedly acute reaction. This would then lead to memories of failure, sadness, things being out of control and just unhappiness being brought to the surface. Even when the current trigger has been resolved, there are years of bad experiences that also need resolving.

I need to research this more, and look at ways to help our skware pegs move on – would the therapies they use for PTSD help here, or would other things be better? I have worked with ex-service people with PTSD, and ecotherapy and animal therapies have helped – and this is something that I instinctively do with my children and with myself. If I find anything, I will report back.

As with my previous post, I am sharing this so if parents, carers, tutors or friends of anyone with ADHD think that there has been an over-reaction (and I am guilty of thoughts like this), maybe we need to take a step back, reflect and see if we can see a reason why.

We have had a horrendous week. Things have happened that have caused anxiety levels to go through the roof, and not just for one square peg, for both of them. This blog relates to ASD. The only that will follow relates to ADHD.

This is my bed from last night, sleeping on the floor of my teen’s room on a pile of old quilts as the air bed as a puncture to ensure he was calm enough to sleep and get through school today, and I’ll probably be back there tonight!

This blog isn’t about the cause of the latest sh*tstorm that we’re going through (tried to find an alternative word, but there just isn’t one!), that’s all being sorted. This is about the anxiety itself, and why this is going to rumble on for a while yet.

Just after Christmas, I reviewed the book ‘The boy who felt too much’ (link here), and in the book, ‘The Intense World Syndrome’ is mentioned. Me being me, I have searched for and found the paper, and read it. It is fascinating reading and it fits with our situation on a day to day basis, not just right now. A brief overview is that the cerebral cortex and the amygdala in the ASD brain is hypersensitive to, well, anything. Lights, sounds, tastes, smells are all included, but so are memories, and this is where it gets really interesting. The ASD brain is programmed to be incredibly self-protecting. Bad memories and bad events are logged and remembered much more than in the neurotypical brain.

Many studies have suggested that some autistic children have heightened anxiety levels and phobias. Markram et al (2007) found similar traits in their ASD rats, especially when compared to the neurotypical rats.; they reacted to the fear stimulus much quicker than the ‘normal’ rats. The researchers also found that once the fear memory was there, it took much longer (if at all) to extinguish. They did point out that this is not necessarily a generalised thing; many people with ASD will have this response and holding onto the fear memories, but many may not. As with everything else with ASD (or ADHD or Dyslexia etc), just because Fred acts like this doesn’t mean that Bob will too.

So, what does this mean in an every day dealing with life’s ups and downs kind of way? I can really relate to this theory. Our youngest can be very rigid with things that have gone wrong. If something bad happens at a cafe or restaurant, we can’t go back. If a family friend or relative has repeated bad behaviour (or at least what he perceived as bad behaviour) and did not apologise, nothing will get him to revisit the memory or forgive that person. There are also fears about going to places, doing activities or eating food that he associates with negative or fearful feelings. We can logically discuss ways to get over this particular event/person/activity/place and he understands the logic, but cannot work his way through it.

The situation we find ourselves in right now relates to this entirely. The event last week has been dealt with, but it was so bad (in his eyes) that he just can’t move past it. His head is full of what if situations as well as reliving what happened last week. Right now, I am struggling to see how we are going to get through this.

I need to stress that the event itself has no relevance here. It could have been anything but if it crossed ‘the line’ it would have been bad enough to illicit this response.

I hope that by sharing this, if you teach a child or young adult with ASD, or if you are a parent or carer and you find yourself in a similar situation, then you will realise that logic, punishment, reward or whatever parenting magic you have up your sleeve will probably have very little effect. If you do find something that works, please let me know!

‘the boy who felt too much’ by Lorenz Wenger (Arcade Publishing, New York, ISBN:9781948924788 hardback, 9781948924795 ebook) was a book I asked for as Christmas present – and I read it cover to cover yesterday. Admittedly it’s not a very long book (222 pages including acknowledgements), but I found it very, very interesting, honest and the scientific research that is within has confirmed many things that I suspected and that we are doing most things right.

It’s the story about renowned neuro-scientist Henry Markram’s research into Autism that was driven by his young son’s diagnosis. It also talks about the struggle to get a diagnosis for Kai, and also their journey with him – and it’was such a relief to see a world leader in neuroscience make the same mistakes the rest of us have.

Their research has shown that rather than being unable to feel or feeling less, autistic people feel more; the region of the brain that ‘feels’ be that joy, fear, worry feels more. Therefore the fear response is greater and the memory of that response will last for longer. Surprises are usually seen as a negative thing because something unexpected will trigger a chain reaction of feelings, and as these will be felt more, it isn’t a good thing. In addition: ‘Autistic people are neither oblivious to feelings, nor do they lack empathy. They just experience the world as so painful that they retreat.‘ and also ‘Individuals with autism spectrum disorder often report that looking in the eyes of others in uncomfortable for them, that it is terribly stressful, or that “it burns”. Traditional accounts have suggested that ASD is characterized by a fundemental lack of interpersonal interest; however, the results of out study align with other recent studies showing oversensitivity.‘

This definitely fits with my limited observations. I obviously live with a young person who is austistic, and so I have experienced the highs a lows first hand, but he is just one person with ASD. I have also taught autistic teens and young adults, and every person is different. However, they all have certain things in common. Most have been overwhelmed by different stimuli, the stimuli may be different, and ranged from crowds to smells to swearing to noise to heat, and so on, but it was when the stimuli got too much that they struggled where most neurotypicals would be fine – they were over stimulated, and so were oversensitive. The book also talks about the need to retreat into a bubble to get away from the real world – and again, this is something we see regularly!

Another excerpt from the book which really, really spoke to me was this:

‘It’s hard on parents when their parents are sick or disabled. Many doctors and psychologists have taken an interest in this burden writing books and essays about it. Bouma and Schweitzer, Hastings and Johnson, Sanders, Morgan, Weiss, all the usual suspects have weighed in. They all reached the same conclusion: no chronic illness, no disorder or disability causes parents more suffering than autism. Particularly if it’s a severe case of autism and the child withdraws from them entirely, offering them no recognizable love, no words, no smiles, their grief is as deep as humanly possible.

The parents cited in these studies all say variations on the same things: It costs you so much strength. You feel wired constantly. You’re always looking out for them. You stop doing things for yourself. You don’t go out anymore. You feel ashamed. Friends stop visiting you. You stop spending time with your partner because you’re both too tired.’

It’s the last sentence that got to me. We do so much as a partnership, but it is exhausting, and we often sit in the evenings absolutely shattered and barely talking. We spend lots of time together, but there isn’t much conversation as we are both empty from juggling work and family. To read that this is normal, that we’re not alone feeling like this has been such a relief – which is why I’ve shared it with you. I am going to make sure that we make an effort to do things together – even if it’s just a trip to the supermarket or walking the dog. If nights out are difficult, we’ll make the most of escapes in the day time.

The book itself is easy to read, there aren’t many parent-guilt parts (there is a bit about how things that happen in the womb can trigger ASD in susceptible foetuses, and another about how stimulation in early years can also have an effect on the severity of ASD, but that’s about it). They do test on rats to investigate brain activity (they breed rats with autism, and then they are killed and the brains investigated) which seems a little harsh as they talk about the problems with the experiments and the retests, but until there is an artificial brain, there isn’t a viable alternative for these kinds of experiments, and so there is the dilemma about whether animal testing is a necessary evil, or just an evil. To be honest, they found things out that I suspected, but without the lab evidence the rest of the scientific community would have viewed their hypotheses as either untested or anecdotally proven.

Animal testing aside, I would definitely recommend this to anyone who has a link with an autistic individual, be that through family, work or friendship. My next step is to find the scientific studies and data as they have published everything as open access, so Google Scholar should be able to find the published articles. When I have found them & read them I will report back!

There are many memes on social media about how our wonderful Skware Pegs can feel isolated, how they can feel trapped or unliked or that there is no one out there for them to like, but parenting the Skware Peg can feel quite isolating too – and I have written about this before (here and here)

I am lucky that I am part of a team – we (my husband and I) are a unit. We both deal with the ups and downs of parenting, we both share the laughter and the tears. However, I work part time and my main job is parenting. My husband works ridiculous hours as his main job, and so a lot of the parenting issues fall to me.

I have never been the most social of people – give me in depth conversations in a small groups rather than big nights out, any day – but having a child who didn’t do play dates, and now doesn’t play online, socialise or want to see many of his peers out of school exacerbates the issue. I do have some very, very good friends at school, but I don’t become part of a wider group because I can’t really do late nights, definitely can’t stay away overnight, and this then becomes a habit that is hard to break. My husband doesn’t have a busy social life either, but his job means that he has work colleagues and occasional travels.

On top of this is the isolating feeling that we are the only ones going through what we are going through. I have written before about my normal being different to your normal (here), and I am really feeling that at the moment! Our eldest was a door slamming, shouting teen. Our youngest withdraws until the stress causes migraines. I really miss the door slamming at times (something I didn’t think I’d ever feel when we were in the midst of it 7 years ago). So, even two siblings who have been brought up the same, in the same family have completely different experiences, and give us completely different experiences.

I could talk to another parent with boys who have ADHD and ASD. We could chat about our ups and downs, but they would be different. I am part of a small WhatsApp group where the parents all have children who are autistic. Some of there stories make me feel like a fraud, especially when it comes to stories of toddler years, because although it was tough at times, we had already gone through it once with a neuro-diverse child, so our normal was never ‘normal’, we just did what we had to do. We managed, we used coping mechanisms, and we were OK. Other stories make me feel jealous (which feels very odd to admit to). You all sleep all night every night in your own beds?? You get to go out and go away for weekends?? You can buy more than one brand of cheese, and have never felt the fear of standing in the only supermarket that sells the brand of cheese he eats and seeing an empty shelf??

I get that all parents have this, that no two children, even identical twins, will be the same, but children with additional needs have different milestones, have different targets, have different successes, so we can’t even look through a parenting book to see where we should be right now, as there isn’t a book written for us. So it gets hard because we can’t share our experiences like other people, and our social media feeds look like all we think about is ASD, ADHD, ODD, Dyslexia, Dyspraxia or whatever. It’s always at the front of our thoughts, but the shares are to try and get people to appreciate what we do, day in, day out.

And I think that’s my point. No one has parented our children and their individual additional needs, so no one knows what we’re going through. No one knows our relief of a Sunday morning pre-school stress migraine only lasting 2 hours, with minimal vomiting at the end of it. No one knows our relief when a potential explosive anger episode diffuses with a slammed door and loud music. Other Skware Peg parents will have their own additional needs to deal with. They may be similar, but they won’t be the same. And the thought that we are the only ones going through this sometimes feels isolating.

My youngest and I were talking about holidays with my mum (we go away for a week with my parents every year), and he pointed out that in two years we will have to make sure our week doesn’t clash with GCSE results week. How can my little baby be just two years away from results? And how can my little baby (now standing over 6′ tall, but still my little baby) be spending this summer worrying about Y10 and the ‘proper’ start of the GCSE syllabus? Why, in the big scheme of things, do these two years and then one day in August mean so much, and cause so much stress? And then why do most kids go on to another two years of stress and another August day of angst, followed by celebrations or disappointments?

I’ve written blogs before about exams (see here) and how you can have success without straight As (see here), but every August I get saddened by the posts on FB from ecstatic parents & students, and the lack of posts from others, who, I assume, didn’t get the grades they wanted or needed.

The world is in turmoil. Social Media, of which I suppose I am a part with this blog that shares my opinions and musings with the world, is affecting voting patterns, elections, is dividing the world and fuelling the far right and the far left. Our planet is burning, politicians are encouraging hate and division, strong economies are on the verge of possible recession, and yet a collection of As and A*s are all that seems to matter this month.

But the problem is, they do matter. These amazing young minds who could change the world, or indeed, could save the world are judged on a piece of paper they may have already picked up if they live in Scotland, or will pick up this week or next in the rest of the country. There will be amazing, unstandardised minds that really could make a huge difference, that don’t do well in standardised tests, and so won’t get the place at uni or won’t get accepted onto an A level course. Although BTECs and Apprenticeships are just as good as A levels and degrees, they don’t all lead to the same point.

There may be a young woman with exam-limiting dyslexia who can visualise a cure for Parkinsons, but she will be lucky if she gets 5 GCSEs, so will do an apprenticeship in something science related, but this route is unlikley to lead her to medical research. Or maybe there is a young man with ADHD who just cannot sit through an exam. Add to this his dyslexia and low self esteem, and the exam results will never reflect his true ability. He wants to teach and inspire young children, and although the BTEC route he’s taking may lead him to applying to do a BEd, it’s unlikely he’ll stick at the course, and we lose the potential of an inspiring male primary teacher that could create ripples and inspire more.

Conversely there may be an incredibly academic young man who wants to be a make up artist and hairdresser – both worthy professions – but because he is a straight A student, and because these still aren’t seen as male profesions, he is encouraged and guided to do A levels, go to university and get an office job that he will be good at, he will earn a good living, but the job won’t ever make his soul sing!

So, here we are. My teen is about to start his GCSEs and he’s worried about the results already (pressure from him, not us). Thousands of teens have opened their Scottish Highers results already, thousands are going to open results today, and thousands more will open results next week. BTEC students will have had their results at the end of July. Results days feel like they mean everything, and in some ways they do, but also they mean nothing. They are a reflection of collection of hours spend in rooms regurgitating information onto a sheet of paper. They do not reflect kindness, empathy, disabilities, innate abilities, happiness, or hurdles that have been overcome.

If today is your day for results, then I wish you luck. I also wish you the confidence to step back and let your teen decide what the next best step for them is – be that work, travel, uni, A levels, retakes, apprenticeships or whatever. Also give them the courage to change their minds. As Baz Luhrmann says in the fabulous song ‘Sunscreen’,

‘ Don’t feel guilty if you don’t know what you want to do with your life.
The most interesting people I know didn’t know at 22 what they wanted to do with their lives
Some of the most interesting 40-year-olds I know still don’t’

And on that note, whatever today brings, sit back and listen……..

Greta Thunberg has made headlines many times already in 2019, and for good reasons. She is a 16 year old who is still at school, and she has made a stand against the inaction of countries and global companies to acknowledge and strive to stop climate change. She is an articulate person, and has a very important message for us all. She is also autistic. This has been mentioned time and time again, and not necessarily in a positive way, especially in some of the daily newspapers.

In the book Neurotribes, Steve Silberman argues that neurodiversity is needed to drive society forward, to change things and to make sure that we evolve. Square pegs are seen throughout history, people like Da Vinci, Newton, Einstein and more recently Jobs, Gates and Temple Grandin. Some of these people may have had diagnosed conditions, but others were just square pegs who pushed the boundaries of what was accepted, and took things in the direction they wanted to go. Many of these didn’t listen when people said no.

More and more research is now backing up the amazing potential that square pegs have. This article describes very accurately the advantages that ADHD can give – but obviously it can cause people lots of problems too, especially as society expects us to conform more and more. The way the autistic brain can help businesses develop and move forward is also being acknowledged (link here). A big meta-analysis (Gyamathy, 2009) also highlights the potential our skware pegs have – but only if they are nurtured and taught in a way that helps them grow and learn, and they need to be accepted.

And this really does happen – for those of you who are parents of strong willed children, skware pegs and teens – think about this. Our eldest son (ADHD & Dyselxia) has asked why, why not, but what if, I’ve been thinking, can we try….since he could talk. He has also disagreed with us, told us no. He has fought against us, school, uni and work when he believed that he was right and other things were wrong. He has been ‘challenging’ at times, and still is, occasionally. BUT…..

He is 22, he saw things weren’t working in the village. He believed that the people in charge were doing things wrong. He asked why, why not and couldn’t we just….? He disagreed, he said no and he did something about it. Last week in the local elections, at 22 he became a District Councillor. At 22 he has beaten an established labour councillor. At 22 he saw something that was broken, and he has put himself forward to try to fix things. At 22 he challenged the establishment.

When you are arguing with your teen, teach them right from wrong, but encourage that free spirit. Encourage that amazing mind that can make a difference. Encourage free thought and discussions. Encourage them to follow their own path and to walk to their own beat & rhythm. Encourage them to soar above you & make a difference!

Square pegs can, and will, change the world, but we have to give them every opportunity to believe in themselves and make it happen!

References:

Davis, H (2019) How thinking differently about autism is helping businesses perform better The Telegraph ( www.telegraph.co.uk)

Gyarmathy, E (2009) “Neurologically Based Achievement Difficulties and/or Autism Spectrum in the Talent Development.” Pszichológia,

Silberman, S (2015) Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently Allen & Unwin, London.

White, M (2019) The Creativity of ADHD Scientific American (www.scientificamerican.com)

Let me introduce you to two friends. Laura is 42, her birthday is in February, she has blonde hair and brown eyes and is blood group B+. Marie is also 42, February birthday, blonde hair and brown eyes and is blood group B+. The similarities don’t end there – they are both middle siblings, they both have Maths degrees and are both now working for the same company, in the same department. John also works in that department, and it was his birthday last week. He invited everyone out for drinks at lunchtime, so Laura and Marie went too. John ordered bacon butties and a drink for everyone and had phoned to pre-order to save time as their boss is strict with lunch break timings.

At the pub, he gave everyone their buttie, but there was a problem. Laura is gluten intolerant and a vegetarian, so couldn’t eat the food. John was shocked, as he had popped out for lunch the week before with Marie, and she had really liked the bacon buttie. Laura tried to explain that she wasn’t like Marie, and she wasn’t being difficult, but just could not eat the sandwich. John was shocked. Laura was the same age, same gender, same birth month and even the same blood group as Marie. That should mean that she likes the same food and be able to eat the same things as Marie. It didn’t make sense that she couldn’t physiologically eat gluten, and that she chose not to eat meat. It wasn’t right. If one blonde, 42 year old B+ woman could eat bread & bacon, then surely everyone ‘like that’ could…….

Obviously these are fictional characters, and this hasn’t happened, but people with learning barriers, hidden disabilities, with some health conditions face scenarios like this all the time. They hear phrases like ‘it can’t be that bad as my friend has fibromyalgia and they work full time and travel all round Europe’ or ‘my friend’s son has ASD, and CBD oil has cured them’ or ‘that isn’t a symptom of ADD’ or ‘are you sure you’re depressed?’ and so the list goes on.

Most of these phrases are from well-meaning people. They give advice because they think they are helping, but more often than not, unsolicited advice that starts with phrases such as ‘are you sure’ or ‘my friend’ or ‘have you tried’ isn’t very helpful. At times it can even be hurtful or upsetting. Most of the time we are sure, we have tried, and much as we wish your friend well, it’s unlikely she or he is in the same situation as us. The same goes for holistic therapies – they are amazing but they need to be used alongside conventional treatment where needed. Sometimes they don’t work, sometimes they are like a holy grail that makes sleep happen, or makes someone concentrate. But just because your friend’s hairdresser’s brother’s sister in law used Vetiver Oil and CBD to almost eliminate fibromyalgia or ‘cure’ dyslexia, doesn’t mean it will work for us – and it doesn’t mean that we will necessarily try it!

This has turned into a negative rant, but that’s not how I meant it to be. My point is that we are all, whether neurodiverse or neurotypical, different and unique. We need to share advice and ideas, but we need to do it without judging, even if that judgement is unconsciously done. We need to celebrate our differences and support each other instead of comparing and criticising. We need to respect that every child has their own strengths and weaknesses, and that even two people like Laura and Marie are likely to have some similarities and a lot more differences.

My child with ASD is my child with ASD. He will do things that others do and he will also do things that are unique to him. He will be different to other children with ASD because he isn’t them. The way the condition affects him even day to day can differ. Just because he went into a cafe last week doesn’t mean he will be able to cope with it this week. The same goes for any child, whether they are a skware peg or not. They are all different, they are all special and all unique. We need to encourage such diversity and encourage our children & ourselves to embrace it when we see it in others.

The main problem with a late Easter, is that is makes the spring term so long (for teachers and for students). The Autumn term seems to go on forever, but the spring term doesn’t usually feel as bad, but here I am, typing away while watching the clock count down to hometime. As we are close to three counties, some schools broke up last week, we break up today, and some other schools break up next Thursday or Friday.

Ahead of us are two weeks of lazier mornings, days out, baking, camera shopping (ARGH!!), me juggling work and him enjoying the lack of school but also stressing at the lack of routine. I’ve tried to stop this before it starts by asking him what he wants to do, but I bet if you asked any teen, not just s skware peg, the answer would be ‘I don’t know’. Same to who do you want to see, is there anywhere you’d really like to go, and do you want to go anywhere for breakfast/lunch/dinner on any of the days?

I do have things planned – we will have day trips to local cities, we are going to meet up with friends, we are going to go camera shopping (savings being used as he wants one of his own for GCSE Art), and we are going to have duvet days watching trash TV with the dog sitting with us. We are also going to go on bike rides, go swimming and get outside as much as possible. We ought to spend some time revising for the school tests that are a week or two into the new term, but we probably won’t do much of that at all!

The most important thing we are going to do is listen to our bodies and our minds. If we end up having more duvet days than bike rides, that’s fine. If the junk food outweighs the healthy options next week, who cares? During the next 2.5 weeks (back on Easter Tuesday) we are going to practice the pause, we are going to breathe, we are going to take it easy, and, I hope, we are going to smile!