Autism and Employment

Autism and Employment

Photo by Rita Morais on Unsplash

One of our dreams for the Allergy Brothers was to provide a paid internship programme for young, neurodiverse people. Honestly, it felt like putting the cart before the horse; providing a programme and then fitting young people to it. I think that we should really be finding the vocations of neurodiverse, young people and then working out what needs to happen to make that a reality. Therefore, we are having a rethink.

The core issue, employment for neurodiverse adults, is still a pressing problem. The National Autistic Society surveyed over 2000 adults, or a person responding on their behalf, in 2016. Just 16% of adults were in full-time, paid work. Only 32% of autistic adults were in some kind of paid work, compared to 47% of disabled adults, and 80% of non-disabled adults. 40% of those surveyed had never worked. 77% of the unemployed, autistic adults said that they wanted to work. There is definitely a need for support into employment.

I can’t help thinking that the world is missing out on some impressive skills. In his 2014 book, Outliers, Malcolm Gladwell suggested that a person needs to undertake 10,000 hours of deliberate practice to become an expert. The Diagnostic and Statistical Manuel (DSM-5) includes “restrictive and repetitive patterns of behaviours, activities or interests” present since early childhood as part of the criteria for a diagnosis of Autism Spectrum Disorder. It’s irritating that a child practising the cello for hours a day is a prodigy undertaking deliberate practice, but an autistic child learning about underground railway systems is seen as disordered. I think a more positive way of looking at “special interests” is as deliberate practice. Let’s get autistic experts working in our community!

Luckily, a team of people are organically forming to try to make this dream a reality. I am really pleased to be part of this. Our first step is to find out what is already available so I am putting a new page on this website with a list of resources as we discover them. Please share any useful resources in the comments too.

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Pathological Demand Avoidance (PDA)

Trigger warnings – diagnosis, medical model jargon used, descriptions of demands. Plus, I tend to write like a lecturer with a big stick up my bum, sorry!

We are starting our work experience programme for young people, who are out of education, soon. We might be working with two young people, who have a diagnosis of autism with PDA traits, so I have been busy finding out more about this. I thought I would share what I have learnt so far, while fully acknowledging that I have no expertise or lived experience of PDA.

PDA is a rare (or maybe just under diagnosed?) part of the autistic spectrum. It is characterised by avoiding demands. Demands are expectations, commands, pressures, obligations; essentially, anything that is not generated by the PDAer is perceived as a demand. To a degree, we all do this; I have been putting off writing this blog post for over a week! People, who are on other parts of the autistic spectrum, may be more likely to show demand avoidance when they are stressed too. PDAers, however, experience demand avoidance more frequently and with far greater intensity that neurotypical people do in their everyday life; hence it is Pathological Demand Avoidance. The demand avoidance is also strongly linked with intense anxiety. It didn’t seem clear to me how this mechanism exactly worked, and, I think, this is due to a lack of understanding about PDA rather than me not understanding the literature. It could be that demands trigger intense anxiety and this leads the person to use avoidance techniques. However, some PDAers feel that demands automatically lead to avoidance, and that causes them anxiety because it often leads to conflict with other people or other negative outcomes. The avoidance techniques used can be extreme too: falling to the floor, spitting, violence towards others, self harm, shutting down. Although, there are plenty of PDAers who mask their anxiety so no one else is aware how hard they are working or how challenged they are by the social world.

Demands are a massive part of life, but neurotypical people hardly notice that they are everywhere! Demands can be intrinsic (coming from within us; e.g. a rumbly tummy demands that we eat something soon) or extrinsic (in the environment; e.g. a traffic light turning red demands that we apply the brakes). Demands can be explicit (e.g. a teacher telling us to turn to page 36 in our Maths book) or implicit (e.g. someone telling us that they have turned on the hot water system so there is enough hot water for a shower; the implied demand is “have a shower!”).

I am writing this in the morning. I have just completed getting my children ready for school and doing the school run. The sheer number of demands on me and the Allergy Brothers in that process becomes overwhelming when you start to think about it: getting up when the alarm goes off, making packed lunches, making breakfast, eating breakfast, having a shower, getting dressed in school uniform, brushing teeth, combing hair, putting on school shoes, choosing clothes to match the weather, getting out the door at a set time (might have failed at that one actually…), etc, etc. If each of those demands triggers intense anxiety, then getting ready for school becomes a emotional ultra marathon. At least, I have returned home. Today, my time is my own until I collect the boys from school. I am working on Allergy Brothers business, but I am choosing to do this. The Allergy Brothers are at school, where there is another barrage of demands: responding to registers, sitting in a specific seat, being quiet, listening, lining up, sitting in assembly, and more, and more through out the day. It’s no wonder that so many children with PDA fail to thrive, or even survive, in a traditional school environment.

Unfortunately, it is hard for young people with PDA to access the support they need to be successful. The first stumbling block is that PDA is not widely known about, and that was my motivation for writing this blog post. The second problem is that PDA is not recognised in either of diagnostic manuals (ICD and DSM) that professionals use. This has led to a postcode lottery, where some areas diagnose PDA and other areas don’t. We live in Essex in the UK. PDA is not a diagnosis recognised in Essex, although people can travel to clinics in London, Norfolk or further afield for diagnosis. However, it may then prove difficult to get organisations in Essex to accept these “out-of-county” diagnoses.

Misdiagnosis is also a big issue. PDA is part of the autistic spectrum so there are traits shared with other forms of autism, such as a lack of understanding of neurotypical social behaviour, obsessions, etc. This can lead to a person being given the diagnosis of autism rather than PDA, and this can be disastrous. The strategies that support an autistic person (visual timetables, first-then boards, plenty of warning about changes, sticking to a routine) are often demands! Therefore, these strategies would make things worse for a PDAer. The Allergy Brothers and I have been writing letters to Beth, a young person with PDA. Her story, told here by her Dad, shows how badly things can go wrong when a diagnosis is wrong.

The further stumbling block is that it is possible for PDAers to thrive, but that requires flexibility, adaptability and empathy from others. These are all things that institutions, like a school, struggle with.

I don’t want this to be a negative post, but it would be unfair to not recognise the struggle families have to access appropriate education in Austerity Britain, and also the gargantuan effort that PDAers put into surviving in a neurotypical world. I am going to finish with the positives of PDAers. Many PDAers are loving, creative, imaginative, caring, courageous and resilient. As adults, they can craft lives that they can control, and achieve in the worlds of work, relationships, and parenting.

If you would like to know more about PDA, I recommend going to the horse’s mouth, and reading the book “PDA by PDAers“, compiled by Sally Cat (N.B. – this is an affiliate link.) Also, the PDA Society website offers a wide variety of information for adults with PDA, families and professionals.

Finally, please let me know if there are any corrections that need to be made. I would especially like to hear from those with lived experience of PDA. Have I got this right? Can you tell me more about what you would want from a work experience programme? Thank you.

Thanks to Helen M., who offered suggestions on this post. She pointed out that PDAers are just as likely to shut down as they are to be aggressive in response to demands. She also recommended the following resources : PDA Parenting blog, Riko’s Page blog, Steph’s Two Girls blog, Harry Thompson’s YouTube channel, and The National Autistic Society website. Thank you, Helen!

The Emotional Impact of a Visual Processing Disorder

April is Autism Acceptance Month. I wrote a post at the beginning of this month about a visual processing disorder called Meares-Irlen Syndrome. This disorder is more common in autistic people, but is also pretty common in the general population. Click here if you want to read that original post. I wanted that post to be full of practical ideas. I hoped that, after reading it, readers felt they could potentially identify behaviours that might suggest they or someone they know has Meares-Irlen Syndrome and what they could do about it. That’s not the whole story though so I wanted to post a second blog about the emotional impact of having Meares-Irlen Syndrome.

The most basic way that Meares-Irlen Syndrome affects a person’s emotional development is by reducing their independence. A lot of the markers of a child’s increasing self help are difficult for people with Meares-Irlen Syndrome. For example, using cutlery is harder. You probably don’t realise it, but, as you move food from your plate to your mouth, this process is monitored by your eyes. If your eyes can’t smoothly track a moving object then they can’t provide your hand with accupexels-photo-1005373.jpegrate feedback about where a fork is in relation to your mouth. This means a lot of stained clothes and, with age, embarrassment about missing your mouth with your food. Crossing a road safely is hard when you can’t visually judge speeds and distances. Riding a bike is difficult when you can’t keep your balance. All these little and big difficulties make it harder to think of yourself as a competent and independent human.

It goes a little deeper than that though. I was talking to a friend and we happened to mention the word “gaslighting”. An extremely astute 9 year old girl was listening to us and asked us what it meant. We explained that it is when someone questions or manipulates your perception and memory so many times that you start to think you are going mad. She coolly replied that it sounded like what people do to her with her sensory processing; “my eyes are so sharp that I can see things that others can’t and then they tell me it is not there.” I thought that was really insightful and sad; and it’s similar if you have Meares-Irlen Syndrome. You perceive the world differently to others: a striped white and black t shirt might cause you to see wavy, rainbow auras in the stripes.

pexels-photo-714698.jpegYou also perceive the world differently to how others expect you to.  In primary school, I was quite verbally clever, but I really wasn’t doing that well at school.  The general consensus was that I was lazy and didn’t concentrate enough.  I started to fulfil my promise suddenly when I moved to secondary school.  I didn’t work out why until I was a teacher myself.  I had a classroom with a whiteboard and a black board next to each other.  I realised that I could read black pen on a white board, but I could not read white chalk on a blackboard at all.  My secondary school had white boards, and my primary school had black boards.  That was the difference in my achievement!  None of my teachers had considered that the gap between my potential and my achievement  due to my perception, not any defects in my personality!

I wonder if having Meares-Irlen Syndrome actually changes your world view.  I couldn’t find any research on this, but it seems plausible that the way you experience the world would impact on how you feel about things.  Someone with Meares-Irlen Syndrome lives in a world, where everything is relative.  Things are not always where you think they are.  Objects, people and animals don’t travel through space in the way you expect.  The world is unpredictable and a difficult place to trust under these circumstances.  I wonder if that extends to how you view people too, and whether people with Meares-Irlen Syndrome are more likely to be anxious and depressed as a result.

I may be taking things too far, but there is the Jesuit saying “Give me a boy until he is 7, and I will show you the man.”  At seven years old, I was clumsy and not really doing that well at school.  I still feel that way, regardless of what I have achieved since.  I can’t help thinking that having Meares-Irlen Syndrome has informed my personality, both my strengths and my weaknesses.

Do you know about this common, under diagnosed visual processing disorder?

April is Autism Acceptance Month.  I thought I would take the opportunity to talk about something other than allergies.  I have Meares-Irlen Syndrome, AKA Visual Stress AKA Scotopic Sensitivity Syndrome.  This is a frequent co-morbid condition with autism, and about 15% of the neurotypical population will have it too.  Meares-Irlen Syndrome is however under diagnosed.  I wasn’t diagnosed until I was 22 years old.  I would really like to save other people the difficulties I had through out my childhood.

I want you to experience what it was like having Meares-Irlen Syndrome, when I was a child at school.  Firstly, move your head from side to side.  What happens?  Hopefully, nothing!  Your brain knows that you are moving your head and stabilises the visual image you see.  When I move my head from side to side, the whole world appears to whoosh from side to side.  This matters because, as we walk along, our weight shifts from one foot to the other so our heads move from side to side.  When I walk along,  it is like walking on the deck of a rolling ship tossed on a stormy sea.  With each step, my whole visual field lurches as my weight shifts to one side.  This is just about manageable in a corridor.  I can use the walls as reference points.  Now, imagine that you are running across a field.  The hedges around the field are far away, it becomes harder to run in a straight line andSadKid to keep your balance.  Now imagine it’s not just an empty field, it’s a playground.  There are other children running around too.  The problem is that my eyes can not smoothly track moving objects.  I can’t keep my eyes on these moving children accurately so I make mistakes and bump into them.  Their movement makes it harder to deal with my moving visual field too.  Now imagine, it’s not just a playground, it’s a netball pitch and I am playing a game.  Someone has thrown the ball at me.  I reach my hands out, but my eyes can’t follow the ball as it comes closer and closer towards me.  The hard, heavy netball hits me on the nose, and my sports teacher says “If you had just been concentrating then that wouldn’t have happened.”  I can say with absolute faith that if I had concentrated on that ball anymore then it would have spontaneously combusted by the power of my mind!  I just couldn’t do it.

Unsurprisingly, I struggled through my whole childhood with fairly basic tasks.  I couldn’t play sports or read music.  I was unable to do basic arithmetic because I couldn’t easily differentiate between numbers; 3 and 8 looked similar, and so did 2 and 5.  I was just guessing the answers.  Crossing the road was a crapshoot. Amazingly, my reading and spelling was good so nobody really noticed.

I managed to do quite well through school and went to university.  It was when I started postgraduate study that things got really tough.  I was struggling to keep up with the reading required.  I was very lucky that someone from Student Services took me seriously when I asked for their advice.  She decided to screen me for Meares-Irlen Syndrome.  This is done by asking the person to read passages with different coloured plastic traDifferent_types_of_overlaysnsparent overlays over the text.  I will never forget the moment that she covered the text with a blue overlay.  Suddenly, the text stood still.  I realised that I had spent my whole life trying to read as the letters moved from the foreground to the background and back again repeatedly.  Suddenly, the letters stayed in the foreground and were clearly visible against the white background.  More than that, my eyes felt like they were being bathed in a cooling waterfall.  I thought everyone’s eyes were irritated and tired all the time; mine always had been!  If you want to see what it is like reading with Meares-Irlen Syndrome, then click on this link to a fantastic video from the Irlen Syndrome website.  I was referred to an optometrist, who confirmed the diagnosis.  Unbelievably, this service has just been cut in our local health authority, a short-term saving in the name of austerity for a long-term price paid by undiagnosed children.

So what signs of Meares-Irlen should you look out for in yourself or others?

  • Looking in a series of short glances
  • Looking away from visual targets
  • Squinting or looking down, or closing one eye
  • Sideway glances
  • Poor eye contact
  • Rubbing or pushing on eyes
  • Behaviour changes in bright lights or sunlight
  • Poor spatial or body awareness
  • Light sensitivity
  • Difficulties with stairs, escalators, or catching balls
  • Poor coordination

As this is an Autism Acceptance month post, I should point out that some autistic people might show less obviously linked behaviours, such as fluttering their fingers before their eyes, or by being mesmerised by colours, patterns, shadows or light.  I noticed a pre-verbal child at the Allergy Brothers’ school, who always touched both walls in a corridor before walking down it.  His mother told me that it was his ritual, but I wondered if he had Meares-Irlen Syndrome.  It seemed to me that he was calibraestereotipiating himself and checking where the walls were.  When I suggested this to his Mum, it turned out that she had used an overlay at school herself.  Meares-Irlen Syndrome runs in families so maybe her son had those difficulties too, but he was unable to tell anyone why he needed to touch the walls.

I have already spoken about one way that people with Meares-Irlen can manage their condition, by using coloured overlays.  Obviously, this is most useful for reading.  It doesn’t really make it any safer to cross the road!  Luckily for me, my postgrad office was only a few doors down from Professor Arnold Wilkins’ office at the University of Essex.  He kindly offered to test me and give me appropriate coloured lenses for free.  This made a big difference to my life.  Although I was disappointed that my best lens colour was a dark green, that was strongly reminiscent of the Wizard of Oz!  It is also possible to wear coloured contact lenses.

A few year’s later, I went to a talk by Professor John Stein at The Royal Institute.  He was talking about his research with fish oils and dyslexia.  I was a little suspicious; it seemed fishy that the brother of Rick Stein, the well-known owner of fish restaurants, was suggesting that fish oils might help!  I figured that I had nothing much to lose, and tried it for a few weeks.  I soon found that I no longer needed my overlays or coloured glasses as I could see fine.  Eventually, I even managed to pass my driving test.  I had found trying to drive a car to be impossible with Meares-Irlen Syndrome.  Now, I take a daily dose of omega oils (vegan versions are available, as well as the traditional fish ones), and it is almost like I don’t have Meares-Irlen Syndrome anymore.

There are ways to manage living with Meares-Irlen Syndrome, and many of these ideas are applicable to children in school, as well as adults and children at home.  I realised that, without consciously thinking about it, I had decorated our home to be Meares-Irlen friendly.  This is a photo of our kitchen (apologies for the as yet unpainted kitchen door; it has just been put in).

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You can see that the paintwork is darker than the walls.  This clearly shows where the walls end and floor or door begins; useful information for someone with Meares-Irlen Syndrome, who is trying to walk around this environment.  The walls are deliberately plain to avoid any unpleasant visual effects.  The colour scheme is generally muted, but the table and cooker are both red so they pop out against the background; the table so I can avoid walking into it, and the cooker for safety.  The decoration in the room is limited to one area so it is not too distracting.  These features could be easily replicated in a school to help students with Meares-Irlen Syndrome.

Most people think of Meares-Irlen Syndrome in relation to reading, but it affects all aspects of a person’s life.  I started this blog with a description of why I found sport so distressing at school.  I still struggle with sports involving visual acuity.  I can’t time a tackle in a football game safely or throw a dart accurately.  However, I have found martial arts to be really helpful.  Training is often regimented so people are standing in rows and stay in their specific spot through out the training session.  It is even possible to compete in kata or forms, where participants carry out choreographed series of movements individually or in pairs.  This is so much less visually difficult than twenty two people running around a football pitch.

Another skill I still can not master is reading music.  The notes just float around the stave for me.  However, I was able to learn music theory alongside the Allergy Brothers when they were learning via the Stave House method!  The Stave House method is based on Montessori ideas, such as using large scale model staves, that I could access.  I find I can read tablature for guitar; the numbers do not float above the lines as much as the dots in traditional music does.  Another alternative is to learn unpitched percussion as the notation for this is also easier to read.

Ultimately, many of the problems of having Meares-Irlen Syndrome can be overcome, but only if you know you have the disorder.  This is why it is so very important that people are aware that Meares-Irlen Syndrome exists.  I hope you forgive me for wandering off topic; normal service will resume.  The next post is guaranteed to be about cake!

 

Freeze Dried Fruit Snacks

We have recently tried two types of freeze fried fruit snacks.  The first type was made by Googly Fruit.  We tried the apple and blueberry flavour, and the banana and raspberry flavour.  In both cases, you have freeze-dried pieces of one fruit (apple or banana) mixed with whole freeze-dried berries (raspberry or blueberry).  The Allergy Brothers were not impressed.  The freeze-dried blueberries were a little yucky looking.  Also, the fruit starts rehydrating in your mouth as you eat it, which is an unusual sensation.  I thought they were okay.  I was hoping to be able to keep a couple of packets in the cupboard for the days when I am disorganised and have run out of fresh fruit or salad to put in their packed lunches, but the freeze-dried fruit just came back home minus one or two tested pieces.

Sour_Cherry_bar

I also tested a Freya’s Sour Cherry crunchy fruit bar.  This product is more processed so it is in the form of a bar (it is broken into chunks in the photo; it’s like a chocolate bar), and has more ingredients (Sour cherries (30%), fruit extract (carob) and fruit juice concentrate (apple and grape), Trehalose, Maltodextrin, Gelling agent:Pectins).  I think this product looked nicer than the slighty weird looking whole freeze-dried berries.  It still rehydrated a bit in your mouth, but not as much as the Googly Fruits products.  You could actually crunch into it as you ate it.

The Allergy Brothers quite like eating fruit (well, at least the ones that they aren’t allergic to) so I don’t think these products are that helpful for us.  However, I do think they have their uses.  If you needed to pack an easy to store, non messy fruit snack (perhaps for a long journey), then these might be good for you.

I think the best use for these products are for children and adults who don’t like fruit normally.  People with sensory processing dysfunctions and who are on the autistic spectrum often find the wet textures of fruits unpleasant to eat.  If you have a child who is happy to eat dry, crunchy foods then these freeze-dried fruits might be a way of encouraging them to eat fruit.  They get the fibre and nutrients in the fruit without the distress of eating a food that has a disagreeable, to them, texture.