The PIG Soapbox.

I've let blogging slide lately. There's been a lot to deal with, school trips to be endured, school play to get out of the way, secondary school transition to fret about.

I have started about five blog posts, but without exception they have all been angry and ranty, which isn't the route I want to go down, so they are festering as draft posts until I can give them the calm attention they need.

Today's post will not be ranty at all, and all credit goes to someone who suggested I blogged about something else that is going on in the PDA Soapbox household at the moment:

Pigs.

We are getting pigs, and we are all incredibly excited, some of us so much that rage flares, but on the whole the planning and preparation that is going into getting our first pigs is a very happy time.

Just to give you some background information, we have a very small field a couple of miles from home. It is our haven, the place we go to to escape from the noise and bustle of everyday life. We keep chickens and ducks, and soon we will keep pigs.

In the last couple of years, as we've been fighting and surviving through assessments and diagnoses, and through the trauma of our oldest in school and the decision to home educate him, our field has become something of a chore, we have lost interest, we haven't spent the time up there that we have done in the past. We've all lacked energy and interest.

The decision to keep pigs has brought the energy zinging back. Once again we are spending whole evenings at our field, building fences, fighting off North Yorkshire's most vicious midges, and yesterday, building a pig shelter out of sixteen straw bales.





Usually a task like this would see our oldest (15, almost certainly PDA) trying to take control and putting everyone's backs up and PDA boy doing the same, but ending up throwing punches in frustration. In short, any group activity like this usually ends in meltdowns.

Yesterday went rather differently. The building of the shelter was separated into three parts, and each of us was in charge of a different area each, satisfying our individual control freakery.

Oldest was in charge of the logistics of moving the straw bales from where they had been dropped off to the area we planned to build, I was the master builder, PDA boy was chief basher, hammering thin wooden stakes through the straw bales to keep them anchored to each other and, hopefully, to the ground. Time will tell how successful our attempt is, when there is a resident pig to rub against the carefully placed walls!

For the first time in a long time, we felt like a team. We worked together well, and all have a huge sense of pride in our achievements. The first day of the summer holidays was an epic success.

On to the pigs.

We are getting three pigs. The first is an adult micro pig called Winston. He belongs to friends and is currently living in a place where he isn't being looked after as well as he should, so he is coming to us as soon as we are ready. He is black and about the size of a very fat Labrador.



Of course it would be cruel to keep him all alone, so we feel it is our duty as caring future pig owners to make sure Winston has friends.

Out of the goodness of our hearts, we have found him two little, tiny piglets who are as yet too young to leave their mother. They will join our founding herd of little pigs in eleven days (not that we're counting or anything...).
I'm not going to jinx the process by discussing these, but will update and blog about them when I can.

The start of our summer has been a resounding success. Today we are having a rest day so we have the energy to tackle tomorrow, more fencing and making sure the pig area has no nails left lying around.

I sincerely hope the holiday carries on as well as it has started!

A bizarre proud day post!

Today I have brought my boys home and I am bursting with pride (and relief). You'd think PDA boy had won a Nobel prize of some sort, when in fact my pride is for a very weird reason.

PDA boy has started to show clear signs of demand avoidance in school. (See, I told you it was a weird reason!)

Actually, thinking about it, the last time I felt pride like this was when my daughter moved school in year 2, she went from being a silent little mouse to a complete chatterbox. When my husband and I were told that she talked too much in class, we were quite teary in our pride that she was finally talking in school!


Since PDA boy did his SATs, he has avoided work as much as possible. He will do this by cleverly distracting his teacher, using humour, as well as a more obvious plain refusal to work (in fact I only learnt this week that during his SATs maths exam, he closed the paper and refused to finish it).

In the last couple of weeks, the signs of avoidance have been much clearer. He has started pacing round the room. He is avoiding all academic work and needing more support.

This week at one point, he stood up, shouted "Abracadabra" and got under a table, where he stayed for half an hour.

A welcome side effect of this more obvious demand avoidance has been a more settled boy at home, sure we've had outbursts, but he is taking himself upstairs to play on his Xbox and give himself a chance to wind down after a day, we haven't had the need for 100% supervision that we do when his mask is more firmly in place.

I don't know if pride is a normal reaction for this behaviour, but I'm so proud that he finally feels he can show how he's feeling, and I'm relieved that he's not swearing and punching in school, as that would open up a whole new set of challenges.

In the last few weeks, I feel that PDA boy has really started to come to terms with his diagnosis, and he's talking about it more openly to certain people, and is starting to understand that there are things he can do to help himself feel happier or less overwhelmed. Whether this is a sign of growing maturity, or that he simply needed time to get his head around things, I have no idea, but we are welcoming this phase with open arms.

For so long, fitting in and appearing neurotypical has been PDA boy's priority. Even though this leaves him feeling exhausted, angry and, at times, suicidal, he has put most of his effort into being like every other child in his class.

I truly hope that this new openness continues when he starts secondary school in September, as I feel this will be his big chance to receive the support he so desperately needs.

As he prepares to leave primary school and start this new adventure, I'm finally starting to feel cautiously optimistic about PDA boy's education. Long may it last!

The trouble with invisible disabilities.

Like most of my blog posts, this hasn't been planned at all.

Like most of them, an irritating event has triggered a need to write this. Someone (who shall remain nameless) in a position where they should (in my opinion) have a good understanding of invisible disabilities and their effects, made a breathtakingly stupid comment a few days ago.

It has made me consider the trouble with invisible disabilities.

And, well, they're invisible, aren't they?

That's the problem. Certain people find it very difficult to get their heads around the fact that invisible disabilities are ........um.........invisible. There are no obvious clues.

As much as we have all read about some disabilities being invisible, unless you live with it, there's still an assumption that you can somehow tell, hence the number of people saying "well he doesn't look autistic".

PDA boy apparently doesn't look autistic, he doesn't show stereotypically autistic signs in school, and when discussing his support needs the other day, in comparison to children with more visible disabilities; physical disabilities and severe learning difficulties, I was told that PDA boy simply needed to make more effort.

In one sentence, this person has, beyond shadow of a doubt, proved that in order to believe PDA boy's diagnosis, she needs to see its physical manifestation within the confines of school, and until that point she will stick steadfastly to her (wrong) opinion that the extent of his difficulties are because he's not trying hard enough.

It is entirely possible that SEN training in schools leaves out masking, so when teachers and headteachers are informed by parents that their child is having significant problems, they simply don't understand, but when they have information provided again and again, it's very difficult not to take it personally that time and time again this information is ignored. And in ignoring, I feel they are making a choice to fail the child.

I don't know one parent who would go to the effort of advocating for their child's needs if it wasn't 100% necessary. In my day to day life, the need to fight for my son to be understood is the single most frustrating thing I have to do, and I consider that banging my head against a brick wall would be altogether more rewarding.

Having a child with an invisible disability opens up a whole can of worms.

The child has greater expectations on them. Despite their autism, because they can hold it in and appear neurotypical, or because any behaviour they show is easy to mistake for NT naughtiness or silliness, they have neurotypical expectations put upon them which simply cannot be coped with and can spell disaster for an individual child.

Parents are wide open to judgemental looks and comments, and even when dealing with professionals who know about the child's diagnosis, there is still largely an assumption that the child has not been disciplined or parented effectively.

When a child has a physical disability, schools must cater for their needs. A local school put in tremendous effort to make sure life for a newly disabled pupil was as easy as possible, that this young person could continue with her education despite life changing injuries following an accident, and they must be applauded for this.

When a child has an invisible disability, the work involved for parents to even have that disability acknowledged, let alone supported, can be a time consuming nightmare.

Some schools get it right. Some schools spot the potential information resource in parents which they can use to their great advantage. Again, these schools must be applauded. They should be held up as shining examples for others to follow their lead.

Unfortunately some schools do not get it right, parents are relegated to being simply Mum and Dad, irrelevant bystanders in proceedings, with no useful knowledge to share. I don't believe this is done deliberately, it is difficult to make that attitude shift from naughty child to child with support needs, especially if you can't see those needs.

We need a whole new approach to invisible disabilities, these pesky conditions that you can't see, and I have an idea.

No, it's not writing the child's diagnosis on their forehead so it's clear to everyone.

It's a radical idea.

When a child has a disability that is not easily observed, there needs to be a willingness in every school, for every one of our children, to involve that child's parents, who are likely to know the child inside out, and to be open minded enough to understand that what you see isn't always what you get. Seeing isn't always believing.

Diagnoses are not handed out like smarties, so if a child has one, it must be respected, whether it can be seen or not.
If a parent is desperate enough about their child's behaviour to involve outside parties, talking to teachers, asking for referrals, there is a good chance that, for whatever reason, that child has difficulties and it is important to take those difficulties seriously for the sake of the child. To deny support or to ignore a valid diagnosis is to fail that child, and no teacher should be choosing that route.

Involving parents is likely to mean that, as the child's needs are met more effectively (and in PDA boy's case, I've mentioned before that this support would be minimal, require no training and, perhaps most importantly, would be free), behaviour from those individuals improves and their academic ability may improve as anxiety lessens.

Everyone's a winner.

How we get to that point of understanding, well, I'm still working on it.

My Masking Child's Diagnosis.

Last week marked the one year anniversary of PDA boy's diagnosis.

PDA boy's diagnosis for us was in two parts. The NHS part and the private part.

Our NHS experience was......interesting, and kept us on our toes. I don't want to rant about the NHS, some things it is brilliant for, and for that I am very grateful - I'd probably be dead several times over without the NHS.

For autism though, it is a bit of a postcode lottery, some areas are brilliant, some not so. I always believe there is room for personal development and growth, particularly in an area where families rely on their drs to have their fingers on the pulse in order to get the understanding and support they need. In some areas though, when it comes to autism, this does not seem to be a priority, which seems very counterproductive, as in many cases a diagnosis is needed before correct strategies will be used, and a child's successful future is reliant on correct strategies being used.

With an autism assessment comes all sorts of intrusive interventions. One thing that struck me was that the expectations of all involved was that my husband and I weren't telling the truth. Questions seemed designed to catch us out, and many of our answers were disregarded. I particularly find this difficult to deal with, I am a lot of things, but a liar isn't one of them.

There were observing professionals visiting PDA boy in school, writing reports, watching his every move, but unfortunately many of the signs they saw were left out of the report that led to his non-diagnosis. My husband and I were told things during conversation when we were being quizzed at our DISCO (diagnostic interview for social and communication disorders), we were told that PDA boy spent most of the lesson with his head on the desk, not working. We were told he made a very literal joke that fell flat. We were told that after being moved to another desk to work, his communication with another boy was off kilter. We were told things that were consistent with masking, watching his peers, reacting a fraction later than others and louder than others. We found out after that it had been noted that his facial expressions in lesson time tended to be very blank.

None of this was included in his report, which ended up a strange document to read, with the ADOS and DISCO sections showing issues, but each area was summed up in favour of school observations. "No difficulty in this area".

The results of both the DISCO and his ADOS (autism diagnostic observation schedule) assessment were ignored in favour of a vote of "No, we can't see anything" by PDA boy's teachers, a parent support advisor and a lady from enhanced mainstream services, all of whom had only seen him in school where he masked expertly. They simply had no knowledge of how well some children can cover up how they're really feeling,

To top this, at a later meeting with the autism co-ordinator at the CDC, I was clearly told that PDA boy's issues were down to parenting, that my husband and I must both deal with him together at all times to show a united front (not sure what was supposed to happen with our other three children). I came out of that appointment broken. My confidence, grown from knowing how much things had improved at home for using PDA strategies, was in tatters.

Our NHS assessment period was a very dark time for us all, and one that I would be very reluctant to go through again should another of our children need it.

It took a few weeks to work through it all, doubting ourselves, unsure of the things that we knew were true.

We then looked into alternatives.

We approached The Elizabeth Newson Centre, who specialise in PDA, to find that they were fully booked and had closed their waiting list until they had caught up with themselves.

They recommended Dr Jo Jones (consultant paediatrician) and Dr Judy Eaton (consultant clinical psychologist).

Contacting them was simple and we had quickly arranged an appointment with only a few weeks to wait.

From contacting Dr Jo and Dr Judy, we then had a nine week wait, which was agonising. We went over and over PDA boy's reports, we doubted ourselves, we fully expected to be faced with more professionals who doubted what we said.

Thankfully, we couldn't have been more wrong.

The appointment was arranged for the afternoon of Thursday the 25th June. We had a three hour drive ahead of us, with a reluctant boy for whom the only positives of the trip were a day off school and a mega three hour game of mini punch, which he won by a mile after spotting a car transporter with (according to him) around fifty minis on board.

We met Jo and Judy and were brought into Jo's beautiful kitchen where my husband and I would talk to Jo.
After initial introductions, PDA boy was taken into another room where Judy carried out a WISC assessment (as he had already had an ADOS assessment which was over the threshold of autism).

My husband and I stayed with Jo in the kitchen where she asked us questions about PDA boy's history.

One of the problems with the NHS assessment was that both my husband and I are wafflers. We were so desperate to give as much relevant information for questions worded ambiguously that our DISCO interview took an hour and a half longer than predicted, and with hindsight, we still probably didn't give the psychologist the information she needed.

Jo was amazing at getting the exact information she needed, she asked questions then explained exactly what she meant, she stopped us when our ramblings were irrelevant, and recognised when we didn't understand a question and put it in a way we (and by we, I mean I) could understand more clearly.

In an hour and a half, we covered more, and Jo had more useful information than in the many, many hours we'd spent talking to the various professionals throughout the NHS assessment period.

After our interview and PDA boy's assessment, Dr Jo then carried out a physical examination on the boy, following which we went into the garden whilst the two doctors discussed the case.

My husband and I were called back in to chat, leaving PDA boy playing on the trampoline and watching a bees nest in an old apple tree.

The verdict was in. Autism with a presentation of pathological demand avoidance.

The relief was immense. The years of questioning ourselves and what the family was going through were over. Not only that, Judy had spotted how angry the boy was, despite him masking and mostly complying, she could clearly see that beneath his mask he was barely suppressing his anger. This felt like a major breakthrough. Someone outside of his immediate family had spotted what we see.

Both reports were received within a week of the appointment. Unlike the NHS reports, we fully recognised our son in the words of the two doctors, nothing was twisted, nothing ignored, there was nothing we could scratch our heads at, puzzled which child they had assessed. This was all 100% PDA boy.

I have such positive memories of this assessment. For the first time in years, we had the opportunity to see two doctors who believed what we were telling them, who didn't try to twist our words in a bid to prove that he wasn't autistic, merely badly parented.

We waited a couple of weeks to tell PDA boy about his diagnosis, to be honest it took that long for him to recover from the long journey and the assessment, so telling him earlier wasn't an option.

He didn't take the news well, and that summer, behaviour wise, as he processed this information, was very difficult.

A year on though, I can honestly say that the diagnosis has been very positive. PDA boy no longer believes he is evil or the bad one in the family, he does still go through difficult times and we are still finding it tricky to have appropriate support put in place, but finally, he is starting to understand who he is, and how to handle things.

He will chat happily to certain people about being autistic, and will answer their questions eloquently. At school though, he is still a closed book.

Knowing he has PDA, and I suppose having it written down as a diagnosis, has made a huge difference to us as parents. We can use PDA strategies wihout self doubt, knowing we are doing the right thing. We can ignore those intent on pointing out that he's not autistic, we're just pandering to him. We can put things into place to help him to cope following a day at school, we can advocate for him confidently.

If we ever get to a point where another of our children needs to be assessed, I think we would bypass the NHS entirely if we could, because I don't personally know if I could cope with another year of interrogations and not being believed at all.

If it were needed, I would be booking my child to be assessed by Dr Jo and Dr Judy, knowing full well that if that child had autism they would be the ones to spot it.

As you can probably tell by everything that I've written, I would recommend them both in a heartbeat.

Processing words.

I apologise in advance as this is another me, me, me post, but it fits best in this blog as 1) it will help me to process this enormous lightbulb moment that I have had and 2) it may help some of you understand better the processing problems that our autistic loved ones may have. As I have found before, now I've had this Eureka moment when it comes to my own processing problems, I can't explain it from someone else's point of view.

I also apologise because, on previewing this, it is very long.

Last week, as I've mentioned before, I attended the second session of Cygnet training. I'll admit, I have gone into these sessions knowing that I have researched autism for years, and knowing that when it comes to my boys, I know them and their autism better than any expert, so I did not expect to learn much. I certainly did not go into it expecting to have a massive, earth shaking revelation about myself.

The session was about communication, and reasons why people on the spectrum have problems communicating with others (yeah, yeah, yeah, I've read it all before, I know loads about this - I know, arrogant much?).

Specifically, my revelation was about processing information. (Again, yeah, yeah, I've read widely, I really don't think you can teach me anything about this - what an idiot I am!).

I've read about people on the autistic spectrum needing time to process questions and information, but on some level I now realise that I didn't fully understand what it meant. I have never, ever realised that this applies to me. I've taken it into account when talking to PDA boy and his older brother, and it helps, but not once in everything I've read have I ever been able to apply it to myself, until last Wednesday.

I, and many others on the autistic spectrum, have a constant dialogue going on in my head, going over conversations I've had, conversations I will have, and conversations I will never have. Most of what I say has happened before in my head, so during real conversations it comes out instantly and fluently. It is rehearsed and, to a certain extent, scripted. I always assumed that everyone does this, and I'm probably right to a certain extent, but with autistic people it can be constant and exhausting, and the need to have these planned answers is important. Take small talk for example, pointless conversations, but something that NTs value. I can pass as a decent small talker because I will pay attention to the weather and current news because these are the things that will be chatted about, I can rehearse these things in my head and I'm ready for a passing "ooh, it's supposed to be summer" (It is indeed, it's June and it's bloody freezing!).

I've known for a long time that I do this conversation rehearsal, so this wasn't the lightbulb moment.

At the cygnet course, one of the course leaders was talking about processing times, I can't remember exactly what she said, but it was along the lines of "Don't forget, if your child gives you a different answer to the one you're expecting, they may not have had time to process the question". (Sorry, I know this doesn't sound like a great revealing moment, you'd expect something profound and deep!). I heard this, and at the time it didn't mean any more than an interesting observation of our childrens' thought processes.

After the course I drove home and went through the things that had been said, the things I had said (Oh god, had I said the wrong thing? Had I annoyed anyone?).

I arrived home and made myself a cup of tea and sat down quietly to recover from the stresses of being in a room with fifteen other people, and it suddenly hit me, like a non-lethal bolt of lightning.

If you give a different answer to the one expected, you may not have had time to process the question.

And the realisation hit me.

I do this.

How have I never known this about myself?

If I am having a conversation, and a question is asked that I'm not prepared for, my brain will search for a Best Fit answer. It may do the job and I get away with it. Or it doesn't quite fit and it looks like I'm either misunderstanding the question or it looks like I'm deliberately evading a tricky question. Or if someone makes a jokey or unexpected comment, I will stand and stare, my brain working hard to come up with something, anything, whilst I stand appearing gormless and humourless.

I believe this may explain some of the difficulties I had during PDA boy's assessments, and more recently with CAMHS.

One question that stands out was from our CAMHS therapist.

"What do you want us to do"

At the time, I was put on the spot, I vaguely knew the answer, but I couldn't find the words. I felt pressure to answer, time is limited, so, rather like a Google search, I put in the key words and my brain found the closest thing to an answer, but it was just useless spiel about PDA boy's difficulties one more time. CAMHS believe we are obstructive, and I think my, perhaps inappropriate, responses have unfortunately confirmed this. I did disclose my autism to the CAMHS therapist, but as I already know that their knowledge and understanding of autism is limited, I shouldn't be surprised that they didn't understand that this may be an issue for some of their patients' parents.

I did eventually think of an answer, but it was days too late.

Since first learning about autism and how it affects my boys, and later realising that I was recognising myself, and going through to my own assessment and diagnosis, this realisation that I do have problems with processing information has been the most mind blowing.

How on earth have I got to forty years old without realising that I need time, sometimes a lot of time, to process information?

How have I not realised that the answers I was so often giving didn't quite fit the question I was asked? It seems so glaringly obvious now.

I want to approach all the people involved in PDA boy's assessments and ask them to recall how I came across in all those difficult, time consuming appointments, but I won't because that's not their job, but it would be interesting to see if their recollections confirm what I have only just learnt about myself. I can remember giving rambling long answers to open ended questions, because I wasn't sure what they wanted to know, so I gave as much detail as possible to make sure I covered what they were answering. Again, I feel sure this was down to processing problems.

During PDA boy's private assessment (which I will talk about next week), the paediatrician we saw, Dr Jo Jones, was very good at asking questions. When I started to ramble, she would stop me saying "no, I don't need all that, I want to know abc", when I was launching into the whole alphabet. She would then explain exactly what she wanted to know, thus saving time and meaning that in the three hours we spent with her, we covered far more than we did within several hours of speaking to people for the NHS assessments. I suspect that she was experienced with parents who probably unknowingly have the same processing issues.

Knowing this about myself is huge.

I can see how I played a part in the failed support through CAMHS, and how the boy's assessments were far harder than they should have been, so my insistence that we were failed by the services supposed to help was not quite as I have perceived it. My own answers probably caused misunderstandings and assumptions about me and my agenda, because looking back I wonder if I did come across as fake, and my answers scripted. I have only ever been honest in these situations, and have been so upset that most people we have worked with have not believed me, but now I think I have the explanation.

My answers have always, always been truthful, but when they come across as rehearsed, it maybe sowed seeds of doubt.

So I intend to take this new information about myself and learn from it. If I'm asked a question, I will stop and think. I will try not to feel panicked into giving an answer as quickly as possible. If necessary I will write the question down and ask if I can give the answer when I've had time to think about it.

I will use this knowledge to be more understanding of my sons' processing difficulties. I will not get frustrated at them, but I will give them more time, and approach things in a way that is more straightforward and requires less complex processing.

I have learnt a big lesson as well. I went into those Cygnet sessions feeling that I knew it, and couldn't possibly learn, but I have. I hope I haven't come across as a smug know-it-all, but will approach these things with a far more open mind in future.

The masking child: Book club analogy.

Let's assume you know nothing about masking. You have no experience of a child who is completely different in the safety of their own home.

How do you describe them to someone else?

I have explained many times to disbelieving people, including experts, what is going on, but my words dont work, I can't get it across effectively enough for them to understand.

So I have come up with an analogy which I think will help the most reluctant observer to understand what some of us go through every day. It may be brief (you'll be pleased to hear!), but I hope others with a masking child will find it a helpful way to explain to their families and friends, and even their child's teachers and other experts involved in their care.

The Book Club

It's the last Friday of the month. Book club night has rolled round quickly.

You have diligently read the month's chosen book, Neurotribes, by Steve Silberman, full of eye opening information giving you an insight into autism and its history.

You take your contribution; a bottle of wine, and drive to the venue where you will meet your fellow Book Clubees.

Sitting in the cosy lounge, the fire flickering brightly, shoes kicked off as you sit back in the comfortable settee, you chat about your week, biding your time until the point where you can discuss in depth the book that you devoted so much energy to.

Lisa starts the ball rolling. You hold your breath, waiting to hear that they also found the book gripping, and were unable to put it down, causing several sleepless nights.

Lisa gives a relaxed smile "Well, I just loved it," Everyone smiles in response.

Lisa continues "the protagonist was gorgeous, even if he was grumpy to start off with, it was so predictable that they'd end up together."

You are confused. This is not the plot of the book that you spent hours reading. Where's Leo Kanner? Hans Asperger?

Izzy's turn now "I know, and the wedding, so lovely, beautiful descriptions, I really felt I was there!"

You eye them up, is this a wind up?

Now it's your turn. "Well, i feel I've really learnt a lot about autism...."

"What?" Everyone turns to stare at you. You feel uncomfortable.

As you continue to give your opinion, you slowly realise that you haven't read the same book as your friends. You ask to have a look at Lisa's copy of the book. You flick through it and see that the main body of text is written in code. Puzzled, you look at the cover of the book.

Realisation dawns.

The dust jacket of their copies of Neurotribes has been printed with the synopsis from Katie Fforde's latest best seller.

You are the only one who has been able to read the book.

You are disappointed. You came prepared to discuss the finer points of peoples experience of autism, you put time and effort into making sure that you could talk knowledgably about this chosen book.

But not only have they not been able to read the book, they have read a synopsis of a different book altogether, one that bears no resemblance whatsoever to the book that you finished. They are also insisting that they have read the book.

You are frustrated.

You are humiliated. Not once did they acknowledge that yes, you alone had read that bloody book, and you are actually the only person in the room who could talk with any authority about that book, yet yours is the voice they ignore.

The End



So there you go. I have lost count of the number of times when some well-meaning expert will briefly observe PDA boy and tell me authoritatively that he is fine, when I know full well he isn't.

PDA boy is Neurotribes, compared with the expert's printer errored synopsis on the dust jacket. They are reading something else entirely in that brief synopsis, but still insisting that this is him. One brief snapshot in all his masking glory, without once taking the time to listen to those who have actually read the book in full, and they still know him better than I do.

I'm not blaming anyone, but if you are unable to read the book, only the fluffy paragraphs on the jacket, you do not then base your entire knowledge of a modern classic on that synopsis.

You either admit that you can't read it and ask for someone who has to explain it, or you take the time to learn the code, then you can read it yourself. You don't turn round to the one person who has read it and tell them they've got it all wrong.

Human behaviour.

One thing that confuses people about PDA boy is his ability to mask.

In public, when he's feeling uncomfortable he will display Behaviour (capital B intentional, there's nothing lower case about this behaviour!), but this behaviour will, weirdly, make him look like any other typical human being, albeit a rude, loud, impulsive one. This shouldn't be a surprise because, after all, he is a human boy, he is not some alien species.

Any behaviours a child shows is essentially human, whether the child is autistic or not.

Having read Dr Ross Greene's The Explosive Child (may have mentioned it before, excellent book, go and buy it), I believe that any "bad" behaviour in any child has its roots in something having triggered the child to behave in that way. In some children (my own included) that behaviour is bigger.

The difference between autistic (and other SN) children and their neurotypical peers is that when a NT child behaves "badly", it is assumed they are being naughty, they will be disciplined, they will learn not to do whatever it is they were doing.
Typically, when an autistic child acts up, there can be one of two options that people take:

1. Assume the child is being deliberately naughty (because let's face it, that is what it looks like!), discipline in the same way a NT child would be disciplined, find it doesn't work, or isn't as effective, assume the child is still being wilful, situation may easily spiral out of control, child is often held to account for their behaviour, even though by that point, they are beyond having any control over their actions.

2. Assume that the child is feeling overwhelmed or anxious, follow the strategies that work for that child to allow them to recover.

I know which option I think makes more sense, but at the same time, I know which option is often chosen.

Option 2 should be the default option for every single child with a diagnosis of autism, or even a suspicion of autism or other neurological difference.

Option 1, when those in charge know about the diagnosis, sets the child up to fail, it is highly unfair for the child to be put in this situation. In my more strident moments, I would go so far as to say in some cases this is downright abusive.

Whilst PDA boy hasn't (yet) reached a point of losing control in a school setting, he has been in situations many times where he is being cocky, silly, rude, distracting, sometimes on his own, sometimes alongside his peers. He will be told off, sometimes on his own, sometimes as part of a group. Each and every time, he will come home and meltdown. He does not understand why he's being told off. He could be told off a million times, it still won't impact on his behaviour, because........ HE IS NOT BEING DELIBERATELY NAUGHTY.

PDA boy may appear to be NT in school, but the fact is, it is an elaborate act, he is not NT, and NT strategies only serve to increase his anxiety, which means he is more likely to show the behaviours his teachers are wishing to curtail.

This is so unfair on him, quite apart from him being disciplined for behaviour that he can't control (a child wouldn't be punished for having an asthma attack, or having a temperature when ill), he is not being given any opportunity to learn how to behave more appropriately, and he is being pushed and pushed to a point where he will be more likely to lose control and end up hurting someone, which would in all likelihood lead to bigger punishments and even exclusion.

If PDA boy's behaviour is spotted and strategies used to help him feel better, not only will his behaviour improve, he will also feel less anxious in school, which will mean that academically he may improve, which will mean he has more options as he gets older, which means he has a greater chance of working in a job he enjoys, which means he is more likely to be happy. Surely this is the hoped outcome for all children? The route to get there may be slightly different for our autistic children, but by using default NT discipline methods across the board, I do wonder if some teachers realise that not only are they setting up the child to fail, they are also setting themselves up for more and more difficult and disruptive behaviour in the classroom.

This isn't intended to be a teacher bashing post. There are wonderful teachers out there who do their utmost for our children. Unfortunately though, it so often happens that teachers, misguidedly following standard procedure, with no malice or harm intended, will unwittingly make life far more difficult for our children, and at the same time make life more difficult for themselves when having to tackle more and more tricky behaviour. It is probably as well to point out as well that this is being written by the mother of a boy who masks so well that the only signs he will show during times of great distress are the same signs his peers will show when mildly pissed off, so I do understand why this is happening.

Not all children will show stereotypical autistic behaviour in a classroom. For some children, PDA boy included, showing any behaviour at all is a big deal to them, and more often than not means they are desperately struggling to keep their feelings under wraps. These are extremely vulnerable moments for our children. These are the moments when our children need more support and understanding.

It is so important that this is understood. Whilst behaviour may look similar, it doesn't always mean the same thing, it doesn't always feel the same to the child, it cannot be treated the same across the board. All children are human, but those with autism do not process things in the same way, they cannot be lumped together with NT children in these situations, as it simply won't help them.