Kicking Myself: The Perpetuation of Stigma Through Inaction

Two of my favourite bloggers on the subject of Autism have given me pause for thought this week. Yesterday was Mental Health Day. 1 in 6 adults will have a coming mental health problem, and yet there’s still such a stigma attached.

How can that possibly be OK?

It’s not.

Anonymously Autistic raised the point that it takes more than awareness of mental health issues to make life easier; we need acceptance of them. 

  
She’s not wrong. We might all be aware of somebody who suffers with mental health difficulties, might know the name of their condition, but do we know how to make them feel comfortable being themselves? Or do we expect them to hide their struggles, to fit in with the norm? Being aware just gives us labels…but it doesn’t make it easier for the people living with those labels. 

Moreover, as kids, we quickly learn that it’s an insult to call someone a spaz, a retard, a psycho. We know what those words really mean, but their currency is in the power of the insult. We have an awareness of difference – the weird kid in class, the tramp in town – but we don’t know what it’s like to be them. And those insults – that acceptance that it’s OK to mock mental health – stays with us.

For example, Tim from The Pathless Woods backs this up to a report of an open letter from a sister calling out the vile stranger who though it OK to mock her autistic brother in a supermarket.

Again, how can that possibly be OK?

Again, it’s not.

But as a society we have an awareness that mental ill-health exists, but we have an acceptance that it’s OK to mock people who suffer. 

It’s not.

  
But it’s so insidious. Who hasn’t called someone “crazy” or “insane” even with affection? Who didn’t avoid the odd kid at school for fear of being ostracised by association? Even without insulting a stranger in a supermarket, whose allowed the stigma of mental health to be perpetualted having stood by whilst derogatory comments were bandied about? 

I have to hold my hand up. I’m guilty of allowing mental health to be stigmatised.

I kick myself for not having the balls to call people out.

I kick myself for not befriending the girl with Downs Syndrome who was assigned to our class dressing room for a dancing show. I kick my 8-year-old self for not telling the popular girls off for teasing her when she didn’t understand what their words implied. I kick myself for being mean by association.

I kick myself for recoiling along with the other kids at primary school as Alan stormed along the corridors, full of rage. I kick myself for being needlessly dramatic in the face of a kid who just needed help.

I kick myself for not standing up to the customers of a coffee shop for their snide comments of a busking tramp. It would have been embarrassing to stand up so publically, but would have been more embarrassing for them to have their shameful behaviour laid out in front of them.

  
I kick myself for allowing “Autism” to be a punchline for an experience of rudeness on Facebook. Getting prissy with “I really don’t think that’s acceptable” isn’t going to help, but neither does letting it slide.

I kick myself for the post a friend put on Facebook of her experiences at comic con, of how her son’s laughed as they came up with increasingly ridiculous questions for a very enthusiastic exhibitor. Someone who was possibly Autistic and obsessed with their specialism. She made it OK for her kids to laugh at people with niche interests, people who find it difficult to socialise, people outside of the norm. And I kick myself for not calling her out. 

I kick myself for not telling the director and the sales manager at work to shut the fuck up and show more respect after they made retard noises about a client with learning difficulties.

I kick myself for not holding myself together or being able to give a clear explanation of Autism when the National Trust woman wanted me to discipline my son better in the middle of a meltdown.

  
And there must be more times. Occasions that have seeped from my conscious memory. Which is possibly even worse as I don’t carry the shame that I should do. And if it’s not shameful to allow people to be miserable then it’s surely a further indication of how accepted it is to be derogatory about mental health issues. Of how the stigma is perpetuated.

Well, that’s NOT acceptable. 

Acceptance should be for people to feel free to be themselves, not a society-shaped version of it. (Society’s ideas of what’s OK is fucked, so why should we listen and conform?) 

Let’s not just be aware of the conditions encompassed by mental ill health; let’s be aware of the people living with those conditions. Let’s accept those people and their needs, not spurn them as ‘other’ and something to distance ourselves from. Let’s make it acceptable for someone to admit that they’re struggling. Let’s accept our own culpability for the current lack of acceptance.

I’m fed up of kicking myself. I’m fed up of the stigma that forces people to hide themselves and allows others to set a derogatory dialogue. I’m fed up of allowing a world to exist that makes life for one in six people to be made harder through lack of acceptance. I’m aware that I need to change.

PS Re: the tramp in town. A couple of kids had far greater balls than me and took time to get to know the man behind the local rumours. Watch their video here: The Enigma of Juggling Jim.

Nemesis

Soft play can be challenging at the best of times. Even with a neurotypical child, the experience of too-bright lighting, too-lax rule implementation and multiple other-people’s-children scenarios can be taxing. 

But SP loves them! Despite the sensory overstimulation of Top Tots Pop Party Hits (or whatever the name is given to the album of ultimate saccharine pop earworms) set on a perma-loop and at intolerance level 11, it provides him with the chance to unleash his urge to just crash into stuff. Whilst Amy will skulk around the lower levels scared of certain death, SP will pelt up ladders and down slides (and often down ladders and up slides) without a care in the world. And it makes my heart leap into my throat less than when he plays in the parkour area of our local park. At least soft play doesn’t involve concrete blocks and somersaulting teenagers.

  
It’s not the noise or the physical challenges that are the problem for SP – it’s the requirement to be nice to other children who want the same thing as you that’s the hard bit.

I thought I’d been shrewd though. Utilising the lack of afternoon schooling I figured a Thursday afternoon would be an ideal time to visit. All the kids are pre-school age before 3 o’clock, resulting in SP being able to lay sole claim to the Over 4’s area. It’s the bit with the best stuff too (the ball pit, the giant gym balls, the funny mirror, the football zone and the  giant tube slide) – it’s a definite win to have free reign over it all. 

And for a while it was.

But then he played with the bead maze table, making the wooden beads follow their path until each row was just as it should be. He then discovered some soft shapes and defied the rules of gravity by getting them to stand upright.

But then another child decided he wanted to move the beads on the bead maze. This was a red rag to SP who launched himself back over to the table. 

The other boy, who was bigger than SP and seemed to be non-verbal and excitedly flappy (and thus may have also been in an excluded-from-school-for-being-autistic situation) very definitely also wanted to put the beads in just the right spot…except his version of where the beads had to go was different from SP’s idea of their right place.

And welcome to Wotld War III: kindergarten edition!

  
SP tried to grab the other child to maul him away from the table. I made a human shield and the other boy giggled aware, unbothered by SP’s protests. SP launched his aural assault – high-pitched screaming. Tears, snot, flailing. 

  
Some children would be able to happily share the beads and divvy up the maze routes between them. But not SP and the boy-who -was-now-his-nemesis.

I knew that moving SP away from the table would only make things worse. And he was too focused on the table to be distracted by anything else. I could only restrain him until either he calmed down or until the boy left.

Eventually the boy moved off and SP was free to move the beads back!…But just as he did so, the boy was back again! I might be an overweight older mum, but I’m like a ninja when it comes to intersecting an SP strike!

And so it was: more tears, more snot, more flailing!

On the brink of man-handling a screaming, lashing SP from the premises (but contemplating the issues of mixing a meltdown with a main road and a wait for a bus) the other boy’s mum told him it was time to go home. 

Oh blessed relief! 

I released my hold on SP and – snap! – he was back to the table as though he hadn’t just resembled Linda Blair in The Exorcist, happily placing the beads back where he should be. And all was fine…for a few minutes. And then, wouldn’t you know it, like a movie cliche, where the hero thinks the battle is over and turns his back, there the Nemesis was again!!! 

  
I think that may have been the point my eardrums shattered.

When you can rationalise with one or both children that’s fine. When you can rationalise with neither that’s tough. As Nemesis’ mum was nowhere to be seen we buried him in the ball pit. I wish! I just went back to being hit in the face by an apoplectic SP. Who may have had a point, but he’d have buried his nemesis for real, so instead I took the blows.

I need to find a way to soothe the rage, because it’s not ok for it to be SP’s default mechanism when things go wrong. But I’m struggling to figure out how to do this. All advice seems to be to avoid situations that might lead to a meltdown. But any situation is open to unpredictability! We can’t just sit in the house. (And there are situations you can’t avoid – not going to school in your pyjamas, for example.) I need to work something out…and the quicker the better. It scares me that SP will grow up with such rage. It scares me that it will lead to school exclusions. It scares me that I’ll always have to step in as a human shield.

As ever SP came away unaffected by the dramatics. Something he does do well is moving on with bearing a grudge or stewing on an incident. I wish I could be the same. Instead I came away tarnished by the afternoon. 

If anybody has any good tips or experiences I’d love to hear them. I’m frazzled and feel as though I’m failing SP. 

The boy at the bead maze table might have been SP’s, but managing his rage is mine.

Power Nap

Dear Apple

I would like to offer you the opportunity of hiring out my son for the purpose of technological research. Given that your products fail to sustain a day of intensive autism-friendly usage, I think it would be in your best interests to research whatever power source allows my son to nap in the back of the car for 5 minutes (literally five minutes, with me urging him to stay awake, but his head lolling anyway) and wake as though he’s had a full night’s sleep. Imagine, a battery charge from 0% to 100% that doesn’t drain any quicker than a normal recharge!

I’m pretty sure, with enough research, you could harness that ability for the good of your products. Which would be a major result because have you experienced the autistic fallout of an expired battery life?!?! Let’s just say, it isn’t pretty!

All I request in return is the chance to recharge my own batteries. Something with marshmallow soft pillows, comforting tog rating and a king-size mattress all to myself. Eight hours undisturbed would be amazing!

It’s a win all round, I feel. I look forward to your reply.

Yours sincerely

GSM

Ripples

If family life is a pond, the idealised life (the sort touted on Instagram by the likes of the Jamie Oliver and Kirstie Allsopp) would be a glossy surface of perfect reflections.

  
Ours isn’t. Ours is a pool during a rainstorm, splashes made to disrupt that surface: all of the pressures that disrupt the smooth flow of life.

One of those splashes is SP. Which sounds harsh, when he’s a bright, charming little boy. But his rigidity and meltdowns are a phenomenal pain in the arse, not to mention the battles with authorities to get the services SP needs and is entitled to. It’s time-consuming, draining and requires a lot of physical and mental focus. 

The splash he makes in our family pond reverberates and affects all of us.

  
Not just myself and Husband (me in terms of daily care, meetings and conversations as his advocate, Husband emotionally as SP pushes him away) but the others too. My dad and older daughters who get roped into childcare when work gets in the way, little Teddy who bears the brunt of SP’s lack of desire to share and Amy who doesn’t always get the attention she deserves or needs.

This week I was asked to a meeting at the school. Despite a start to school that exceeded expectation, it’s been decided that SP should only attend morning sessions until half term. The school just doesn’t have the resources to ensure that SP gets the support he needs whilst also settling in the  other 30 children in the class. 

Splash!

I should have been more proactive when it came to ensuring resources were in place for him starting school. I should have started the EHCP process sooner (although their argument of suck-it-and-see may have still been the result). I followed the advice of the education staff around me. I should have fought harder. Or I should have chosen a school that could meet his needs as standard. But are his needs severe enough to need a place at a special school when they’re scarce enough for all disabilities? There are no ASD specific schools in the area and that in itself makes me angry, but anger just takes up more energy and achieves nothing.

And thus arrangements fail and I’ll be relying on other people to fill in where work and childcare clash. There’s the pressure to be available to everyone, the guilt of being unable to achieve the impossible. Guilt also at wanting SP to conform the same as those other neurotypical kids to make life easier, when without other splashes in the pond we’d be able to focus purely on his needs.

  
But worse. Amongst the ripples, the largest get focused on the most. It’s easy to ignore smaller splashes. And so it is with Amy. The meeting also included concern about her as her anxiety levels have increased to an extent that she will barely speak at school. There’s nothing wrong with being more introverted or sensitive and this has always been the case, but now it’s holding her back. Her anxiety is making her scared to try in case she’s wrong or she fails.

SPLASH!

But she’s not the failure – I am! I’ve failed her, by letting her go under the radar. When one child demands so much attention it’s so easy to forget that the ‘normal’ ones need support too. Whatever the underlying cause of her worries, we hoped they’d just go away. But life doesn’t work like that.

  
Outside today it’s raining. Drips and splashes making everything harder, making us weary. It reflects how I feel. I want to be positive, but at the moment it’s hard and I crave a calm pond. 

A Request

” I want to go to Thomas Land Japan.”

  
It’s Saturday lunchtime and Thomas Land Japan is 5,844 miles away. SP wants us to drive. I’m not sure we’ll make it by closing time.

  
“Oh come on – it’ll be fun.” (Followed by 8 hours of “oh, but pleeeeeease.“)

One day I might let him know there’s actually a Thomas Land in Staffordshire…but possibly not until we’re in the car with tickets booked.

Until then, is there a way I can block all access to Thomas Land-related YouTube clips? Are the parental controls that adaptable? Or does anyone know how to convince an autistic 4-year-old of the concepts of time/space/mummy not having a money tree in the garden?

In the meantime, I have warned Husband there’s every chance one day he’ll come back from a football trip to find a note on the telly: “Gone to Thomas Land Japan. Back (much) later.”

Fingers

SP has remarkably long fingers. The sort that inpire comments about concert pianists and ET.

They are even more remarkable as the most accurate barometer of his mood going. When SP is anxious they ball into fists. Even when his facial expression and other body language seem to be ok, those fists are an indication that the whole world could collapse at any moment. 

He was born with fists tight and it took an eternity for those long fingers to unfurl.


When he would feed, however, once they had uncurled, he would drum on my breast with them, a relaxed and content patter of tiny fingers. Now, when he’s excited his fingers will flicker and twitch, an outlet for his excessive energy. As he cuddles to sleep at night he strokes my fingernails, soothed by the smooth surface of my varnish.

  
This week has been SP’s first week in mainstream school. Last Sunday I couldn’t sleep out of anxiety: would he wear his uniform; would the classroom be too much; would he follow instruction; would he cope at lunchtime; would we be able to get him into his PE kit when he hates shorts and different shoes; would he lash out at the other children and staff; what would the repercussions be if he did? 

He objected to his new jumper and I stuck his clip-on tie on him without him realising. I hugged him tight and carried him into the classroom, aware that his fists were in tight balls. 

  
They relaxed as we settled him into an activity and started to fidget. I allowed myself to relax as I headed out the door. If his fingers were ok, he was ok. Shakira’s hips don’t lie and neither do SP’s digits!

It was a long day though and although he came out full of smiles, the ordeal was evident: his hands were in fists as we headed to the park for a promised play. We didn’t stay long; the day had taken it out of him.

  
The next day was a challenge. He resisted the jumper and tie of his uniform, he refused to put his shoes on. Again his hands were in balls and despite it being a lovely day of long overdue me-time, I couldn’t shake an uneasy feeling. When I picked him up this time I was told that it had been a bad day.

He did kick off about his PE kit, but thankfully the school were relaxed enough to let him wear jogging bottoms and his usual shoes. And the rest of the week has been a revelation. He’s a lone figure amongst the crowd of new children, preferring to take held straight into his chosen spot on the carpet rather than play before class. But he listens and does as he’s instructed. He helps tidy and is generally sweet. He’s coping, even though “there are lots of children on the carpet, Mummy.” He’s been chosen as the first Star of the Week. (Although I’m not sure how he’s going to cope in an assembly of 270 children plus staff. We’ll cross that bridge on Monday.)

As we left the playground yesterday, SP ran up and down the number grid counting the numbers, 1 to 100. His fingers flicked as he counted, matching the big smile on his face. 

I know we’re going to face plenty of challenges with school, particularly with the council so stubborn to meet the additional needs of those with cognitive/social disabilities. There will be days that will go brilliantly and there will be days where it’s going to take a tsunami of an effort just to get SP through the gates. 

But watching his fingers twitch and flicker makes my heart swell. He did it:he survived his first week at school and I couldn’t be more proud of him. Thumbs up!

Faceplant at the First Hurdle

It was a sunny afternoon and I was pushing SP on the swings in the park. My phone rang. “Hello, this is ****, EHCP Coordinator from the Council.” Ah, marvellous! I’d been trying to get hold of **** for more than a week after she’d left me a voicemail message after 4pm on a Friday requesting a callback, knowing that she’d be unavailable for the next 11 days. (Ah, but I forget that SEN parents aren’t meant to have lives and jobs and are meant to be available for the merest hint of communication from the other side at all times.) The six-week deadline for a response about a decision to assess for a plan had already been and gone by 3 weeks, so the extra 11-day wait wasn’t the best way to start. We’d stumbled out of the blocks.

  
As it happens, a delay was the best part of the process.

****: “So, as you remember from our previous conversations…err…no*….so you remember, you requested an assessment for SP.”

*We’d had no previous conversation. It seemed **** was the one who had needed memory prompts.

Me: “Yes.”

****: “We’ve decided not to assess him.”

Me: “Whaaat?!”

****: “We’ve decided that as SP is due to change school setting there’s insufficient evidence that he won’t be able to cope in mainstream school. The school will have to prove that they can’t meet his needs. It’s their duty to meet them. If they can’t then we’ll reconsider assessment.”

Even requesting an assessment is no easy task. The nursery SENCO and I completed pages and pages of detailed information about SP’s needs and areas of difficulty. We attached every report going, those from his autism assessment to more than a year’s worth of IEPs showing that he wasn’t meeting even individually-tailored targets. How is that insufficient evidence?

****: “But that was at the nursery. With a rigorous transition the school will be prepared for his needs.”

Me: “But it’s the start of the summer holidays. It’s too late for any more transition and the school have already said that they don’t feel they can meet his needs in the long term.”

****: “Well, they have to. They’re breaking the law otherwise.”

But the point of assessing SP for a Plan was so that the school would know how to meet his needs. The level of support to be provided would be in black-and-white. Everyone would know where they stood. And SP could hit the ground running at school. If you’re already in a disadvantaged position you don’t want to start on a back foot. That was the whole point of our timing! And now it was being held against us! 

The following paperwork that confirmed ****’s decision stated that SP has profound and long-term needs. Although off-the-scale academically, SP’s social skills and personal development are around the same level as an 18-month/2-year-old. Would you expect a toddler to suck up a full mainstream school day  every week day during term time without additional support??! 

I was getting nowhere with **** on the phone though and I felt unprepared. A Local Authority advisor had looked at the application before it was sent off. It was a shoe-in. Literally, the last words I’d had from the nursery SENCO was “Don’t worry – there’s no way SP won’t get a plan. Everything will be fine.”

  
Never mind not getting a Plan; we weren’t even getting an assessment for a Plan!

Me: “How long should I wait if I feel the school aren’t meeting SP’s needs and I want to apply again?”

****: “We’d recommend two IEP cycles, so that the school has a chance to rectify things if they aren’t right from the off.”

So that’s 1) a wait for an initial IEP to be written (which, let’s face it, won’t be done straight away). Then 2) we wait for a bumpy transition and a look at how things can be improved. And then 3) when SP has decided school is awful because everyone’s making it up as they go along and everything keeps changing and there’s no regular, reliable support, when the teacher’s at breaking point and the other kids in the class are being affected by SP’s behaviour, then – then! – we can start the process again?!?!?!!!! Even if he then gets accepted as needing a Plan without going to Tribunal or haggling over the details of the draft (all of which, let’s face it, are going to happen if the tales I’ve heard of a responsibility-shirking Local Authority are to be believed) then that’s the first year of SP’s life at school written off. 

The 2014 Children & Families Act states that all children have the right to be enabled to reach the same educational milestones as their peers. How is delaying support for children whose attainment is already delayed helping achieve that?!

I feel deflated yet livid. How can people who’ve a) not met my child and b) not seen the environment he’ll be going into decide that he’s not entitled to his legal rights because they need to see that a suck-it-and-see approach needs to fail first? We can appeal and we will. Jeffrey Julmis is my inspiration. We’ve face planted at the first hurdle, but we’re going to get up and finish this goddam race, even though it’d be easier just limp off the track, defeated.

  
But at least Julmis wasn’t told he had a set time to complete the course…and then found that someone had built a brick wall in front of the finishing line. Mind you, like Julmis, a wrong move could disqualify us.

  
We have two months in which to appeal. Two months that includes most of the six weeks summer holidays. A summer holidays when we can’t see SP in his school setting to complete assessments, when we can’t get hold of professionals who can help and can’t even get a reply from the school acknowledging that they’ll put in a referral that I’ll need to strengthen our case. (The Council didn’t even think the school might want to know that SP’s assessment request has been turned down and only thought to cc the nursey into their decision letter.) I’m sure helping find evidence to boost an appeal will be the last thing SP’s new teacher will need as soon as the term starts too, what with having settle 30 newbie 4-year-olds into their first days at school and all!!!

I’m going to keep hurdling, however. Even with a Local Authority that want to keep all of the gold medals. Watch out, County Council – I’m coming after you!!!

  

Spilt Milkshake.

A version of this was also posted on another of my blogs: https://stickyspoons.wordpress.com/2016/07/28/5-crying-over-spilt-milkshake/

This is about why we’re in the National Autistic Society’s majority.

    
The National Autistic Society are working towards a more autism-friendly high street. According to their research, 79% of autistic people feel socially isolated, as do 70% of their families. Sensory issues play a big part in the withdrawal of people with autism from an over-stimulating world – a world that becomes physically painful when you’re processing it in a way that neurotypical people find hard to understand.* But isolation comes too from the reaction of others when things go wrong. There’s no a person with autism or their family who can’t relate a catalogue of hideous/humiliating moments of public judgement, the result of which, life can go two ways: you can develop the hide of a rhino’s arse (and/or you cry a lot) or you stop going out.

*NAS is also trying to help increase this understanding and are holding a virtual reality tour around the UK this summer. I doubt it will be a pleasant experience, but really that’s the point. 

* * *

Pizza Hut. 30/05/2015.

It wasn’t a massively-ambitious plan. (Or at least not a massively ambitious plan by neurotypical standards. The planning and preparation involved in taking SP as someone with autism somewhere new is something we’re still adjusting to.) Amy fancied a trip to Pizza Hut a) because she thought her beloved teaching assistant pulled a second job there and b) their milkshakes are to die for. We hadn’t eaten. I like pizza. It was mid-afternoon on a Saturday. We piled in the car and headed on our way.
At this point we didn’t know that SP was autistic – we were only at the beginning of a long journey towards a diagnosis – but we knew he was different to most children. He was more prone to a temper tantrum than any of my other kids and could turn on a dime. 

And, to be honest, things started off ok. SP was perky and happy to be shown to our corner table. But one of his things at the time was the need to scout out a place, to trundle every inch before being satisfied with a location. Obviously, this is fine if you’re at a soft play area, but less ideal when there are people carrying hot food and drinks. Our order placed, I think the request to stay seated is what triggered the meltdown.
Tantrums are bad enough at home, but at least they’re confined to private walls where you know where’s safe and to familiar ears who understand. In public they become another beast altogether. I’d learnt enough to know though that giving him attention would only escalate things. Ignore him and he’d calm down as though nothing had happened. A couple of minutes and a win would be worth the short-term shrieking.
But then the waiter came over:
“Excuse me, but we’ve had a complaint about your son.”

I tried to explain that, yes, he was making a noise, but, if we ignored him it would stop soon enough, but if I tried to intervene it would only get worse. And it would make it worse for the next time too.
“Yes, I appreciate that, but still, it’s a complaint and it looks as though you’re not parenting.”
And thus, I had to chaperone SP from the dining area to the takeaway vestibule, leaving Amy and Eve in their seats. And because – no shit, Sherlock – moving him made the situation worse, we ended up sitting in the car, SP restrained in his car seat, whilst he calmed down (whilst I recovered from the humiliation too) leaving Amy and Eve in the restaurant supping milkshakes.
(I don’t know what we’d have done if Eve hadn’t been with us. Walked without paying, I guess – but also simultaneously destroying an afternoon for everyone.)

And he did calm down. Eventually. Although it took a lot longer than it would have done otherwise. In hindsight, it wasn’t a temper tantrum, it was a meltdown. They’re very different things. SP needed to know his environment and not being able to do that increased his anxiety to the point where he couldn’t cope. Moreover, trying to talk an autistic person out of a meltdown is a sure strategy to failure. They’re no longer in control – flooded by hormones, sights, sounds and sensations. Bending over them, talking to them, even if you’re trying to soothe, just adds to the cacophony, when what they need is space and time. Demonstrably parenting for the benefit of those in proximity to a meltdown is the very worst thing to do. But it’s what autism parents feel they should do to stop the tuts and stares, the comments and the requests to leave. 

And I get it – I really do. It’s not pleasant to share an environment with a screaming, flailing child. I know because I live with the assaults day in, day out. If it’s irritating and unpleasant for a few minutes, I want to tell those who look with such disgust that we’ve intruded on their little world with our shrill, irritating one, imagine it as something you have to live with. Imagine having to be mindful of every possible trigger, ready to de-escalate before the storm breaks.
And imagine what it must be like to live with a red mist that can overwhelm you. Being unable to express rationally all that’s going on in your head and what needs to change to make it better! Imagine never being able to get away from that. 
And imagine knowing that you’re unwelcomed by society for reaching that point. 
Is it any wonder that we retreat into our private worlds where things are comfortable and people understand? Is it any wonder that the majority of us affected by autism feel socially isolated?
We went back and joined Eve and Amy for our food. I let SP case the joint, hoping to catch a sheepish glance from the complainant, envisaging having a temper tantrum of my own right up in their face. Yes, I’d have got barred, but I haven’t been to a Pizza Hut since, no matter how delicious their milkshakes.
  
On Instagram it looked as though we’d had a lovely time, but it affected my confidence in handling public situations and was the start of a reticence towards social situations. But I’m learning the triggers better and pack up resources to keep SP sated. We eat fast! We’ve found places where SP is happy to eat. And in those places we’re regular faces. People with autism like the familiar. Win them over and you’ve got a brand-loyal customer second-to-none. Make them feel uncomfortable and you won’t see them or their families for dust. The failing high street might do well to remember that.

Shopping with Mrs Adelman

SP, by and large, isn’t a fan on shopping. I, by and large, am not a fan of buying stuff online, paying for postage and having to wait in for deliveries. It means that, by and large, if I want to buy stuff I have to cram it into my lunch break (if I get one…and even then I’m so consumed by the need for food I forget what I needed to buy) or I have to sneak out of the house when there’s someone else around to keep an eye on him as he stays glued to his iPad. It’s not ideal.

There is one shop that SP likes: the large out-of-town Sainsbury’s. Not that we get any practical shopping done. Instead we watch the bank of TVs with its endless loop of promo videos that you’d think we didn’t have a telly in the house. We’ve been known to stand there (and by ‘stand’ I really mean repeatedly run up and down the length of the display) for up to an hour. To lure him away I have to tempt him with the search for chocolate buttons. Except that he’s learnt that the chocolate buttons are in aisle 13, so anything for dinner has to be grabbed as we dash by the point of sale ends between the TVs and the confectionary.

Essentially from a monolithic supermarket I’m lucky if I get to leave with pizza. Maybe I should give more thought to Internet shopping.

Sometimes though a shopping trip is unavoidable – the other week I had to buy school uniform and a new car seat for SP as his sensory issues meant that he’d slip his shoulder restraints each and every time rather than being confined. To soften the deal I said I’d take him to the farm (to bounce on their trampolines as much as look at the animals).

It didn’t work out like that.

In the uniform shop SP was very good, pointing stuff out and saying “thank you” to everything. I breathed a sigh of relief. He declared he wanted to go to KFC. I agreed – it was lunchtime (I was hoping for sandwiches and cake in the farm café, but eating dead chicken before we saw live chickens was do-able). SP enthusiastically waved goodbye to everyone in the shop – staff and customers alike – and we headed on our way.

It was when we went to buy the car seat that things got tricky. SP immediately launched himself up the main aisle, chanting “24-hour shopping, 24-hour shopping” on repeat. Trying to make an informed purchasing decision whilst simultaneously ensuring he didn’t then make a beeline for the automatic doors, wasn’t easy. I feared we’d actually end up shopping for 24 hours! As soon as it became clear that the car seat I wanted wasn’t in stock (essentially because a shop actually holding anything more than a bunch of display products is so passé, apparently) I ordered it online… from my phone…whilst in the middle of the shop. (Don’t c’ha  just love the 21st century? Well, actually, when it’s like that – no.) I regretted not doing the whole thing from the comfort of my own house…but not as much as I was about to!

Technically we were now free to go to the farm at least. Except, no.

  
Do you remember the episode of Friends when Phoebe became possessed with the spirit of elderly client, Mrs Adelman and she wouldn’t leave until she’d “seen everything”? Well, it seemed that SP had been similarly possessed! From being shop-intolerant, he decided I was absolutely vital that we looked extensively at every shop along the strip. Some of them twice, and in the case of Argos, three times!!! (It’s Argos’s fault for having a demo video for Lego Dimensions playing, with a console with big shiny red interactive buttons. May SP never ever have any responsibilty for national security – we’d all be a gonner by the end of his induction tour!)

We walked a total of more than 12,000 steps – nearly 6 miles – backwards and forwards, backwards and forwards.

We looked at games consoles, toiletries, sandwich fillings and muffins, three-piece sofa suites, mobile phones and fridges, plants, garden furniture, water features and sheds. 

  
It was only when he’d also got halfway around Tesco that he’d declared he’d “done.” Typically his legs then immediately stopped working and I had to carry him back to the car.

The afternoon had gone and we’d missed the chance to go to the farm. Not that SP cared – as far as he was concerned he’d had a brilliant day. So much so he wanted to repeat the experience the following week! Although SP is now a shopaholic, it’s only on his terms and so I’ve had to resort to sneaking out of the house if I want to actually get stuff done! With the summer break now underway, unless I want to spend my days off trawling after SP until Security throws us out for suspicious activity, I really must sort out an online account. Mrs Adelman can go and haunt somebody else. I’m done!

Beige

Like a lot of those on the spectrum, SP has a limited diet of very specific set of accepted foods.

Most of these are beige.

Chips, crisps, cheese sandwiches with white bread, white Mr Whippy ice cream,bananas (sometimes).

Cucumbers are ok and ham is sometimes acceptable in a sandwich.  Innocent Fruit Tubes are devoured in multiples, although the problem there is that I can only buy them in KFC – I must be the only person who visits with the primary intent of buying squashed fruit!

I must also be the only person who puts slices of cake into a packed lunchbox just to conform to expectation, knowing full well it’ll come back uneaten.

Cadbury’s Giant Chocolate Buttons are all that sustains him some days. Even then the ones that are the wrong shape get unceremoniously turfed out. If Cadbury’s are ever looking for a particularly pernickety Quality Controller, SP’s your boy!

At nursery he will eat apples and drink milk, but not at home. Go figure.

I wonder what happened to the baby who used to be so willing to try everything. One thing at a time gradually dropped from his palate if they weren’t eaten frequently enough. Shepherd’s pie, cheese risotto, fish fingers, corned beef hash, scrambled eggs with ketchup, yogurts…foods went from ‘delicious’ to ‘don’t go there’ without rhyme or reason,

Luckily his tastebuds are seemingly hyposensitive and he doesn’t pick up on the vitamin supplement that I add to his juice. His hang ups seem to come purely from how a food looks.

Unfortunately the usual tactics of encouragement don’t work. It doesn’t matter what everyone else is eating, if it’s green/meaty/wet/not beige it’s not leaving the plate. Arranging things into cutesy displays gets nothing more than a look of disinterest. Hiding vegetable is tomato sauce won’t work if tomato sauce is rejected on the grounds of it already being too wet and too red. 

We try a relaxed, ASD-friendly approach of gradual introduction and still he sticks to his sandwich and cucumber guns.

But then sometimes there’s a glimmer. This evening, having watched a character eating a bowl of spaghetti on a YouTube video, SP requested spaghetti for himself! Never mind that it was bedtime, I skipped my way to the kitchen to boil the pasta before he changed his mind.
  
And he ate it! Not all of it, but enough to have the Husband and I high-fiving! Ok, it’s another beige food, and it might not be on his list tomorrow, but for today it’s at least another food.

Sometimes it’s the little things that make us happy, even if they’re beige.