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Tag: neurodiversity

The Disability Price Tag

How bad service design punishes those with a disability.

If you’ve never heard of the ‘Disability Price Tag’; the simplest way to describe it is that it’s the price you pay for costly mistakes due to symptoms of (or a byproduct of) your disability.

An image by the ADHD treatment centre describing the common issues that cause the 'ADHD tax'
The ADHD tax – as described by the ADHD Treatment Centre

People with ADHD are so often hit by the disability price tag; it’s been nicknamed the “ADHD Tax“, some obvious examples of this are parking and traffic tickets, late fees, high interest debt (i.e. credit cards), and low credit score (leading to higher interest debt, inability to get loans, problems renting apartments and buying cars, etc.) But this isn’t the only way people with disabilities are being hit financially.

Heating, insurance, equipment and care cost’s are all higher for people with Disabilities; and the Scope Extra Cost Commission in 2014 found that people with a Disability faced an extra £550 a month on their living expenses due to disability-related expenditure. In fact a study in 2015 by MacInnes, T., Tinson, A., Hughes, C., Born, T.B., Aldridge, H: Monitoring poverty and social exclusion found the poverty rate among people in families where someone has a disability is 8% higher than of those in families where no one is disabled.

For able-bodied and/or neurotypical folks, these can be really hard to comprehend; and even when they can comprehend the truth is, they have little sympathy for it.

But even if we acknowledge that people with Disabilities face the Disability Price Tag; there’s little recognition of the fact that bad service design can make these problems significantly worse for people with disabilities.

Many companies deliberately make it hard to cancel your subscription after a free trial period; or to register a complaint or appeal an unjustified fine; this is a fact everyone can easily recognise. What people fail to recognise if that this disproportionately affects people with disabilities, who are likely they to find it much harder to navigate these systems.

An image showing some complicated cancellation instructions
Complicated cancellation instructions

Let’s examine an example we’ve been dealing with recently; my family recently paid for parking in Manchester‘s Arndale shopping centre; where they’ve recently swapped their parking system to a new paperless (but still not digital) system.

The new system requires you to enter your Registration number on the machine and pay, but doesn’t issue you a ticket. There are a number of flaws in here that makes this utterly inaccessible and un-user friendly for people; so lets consider the issues this could cause:

  1. You have to guess how long you’ll need to park; if you need longer there is no easy way to top up your time without physically returning to the machine to extend it. Not very practical for those with a physical impairment, or who have caring responsibilities which would make nipping back to the car difficult.
  2. As users aren’t issued a ticket, and the machine doesn’t capture your mobile number or any way of issuing an e-ticket or reminder, users have to remember what time their ticket ends; this is not designed to support those with a cognitive disability which may make remembering information difficult.
  3. The system requires you to enter your registration number from memory; there are no reminders or prompts on the system; which features a normal alpha-numeric keyboard, relying on you to know your registration by heart; which means it can be very easy to enter your registration plate wrong. As the system doesn’t issue you a ticket/receipt; nor does it email you your ticket information, there is no way to check you entered the information correctly. This can easily trip up people with a learning difficulty like Dyslexia, or for those whom the English Alphabet is not their default.

My partner has Dyslexia and ASC and I have ADHD (always a winning combination when it comes to the Disability Price Tag). When we parked and went to purchase the ticket we managed to accidentally mix up the O for a 0; because we didn’t receive a copy of our ticket, we had no way of knowing we’d made this mistake, and simply assumed everything was fine. Upon returning to our car we spotted the fine sitting on the car window. We went to speak to the parking warden, who acknowledged we did indeed have a valid ticket on the system, but that the reg was technically wrong, and therefor we’d been fined. The warden acknowledged this was a very common issue that caught many people out; and recommended we appeal.

Appealing in and of its self is not an easy process; and what many able-bodied and neurotypical folks don’t understand is how much privilege it takes to appeal things; and how many spoons it can take to do so. Lets use our example of the the parking fine again:

  • The details of the fine and how to appeal it was only available on a piece of paper, and you have to wait unto 24hrs for the system to be updated before you can appeal (very easy to lose for those with ADHD etc.)
  • The print is extremely small (not good for those with a visual impairment and/or Dyslexia etc.);
  • and the reference number is not only small but also long and complex (very easy to get wrong for those with Visual Impairments or ADHD/ Dyslexia etc.)

Of course, to make matters more frustrating Manchester City Council then rejected the appeal, saying it’s the users responsibility to make sure they have bought their parking ticket correctly; which is a prime example of the higher price tag people with a Disability can face for doing that so many people would consider relatively simple.

So, how when we’re designing services can we do better? The answer is easy than you think; carry out research and test with users! User research and testing aren’t only applicable when we’re developing web services; they are equally important when developing and rolling out new systems in the physical world. Within Disabled service provision, this co-production of services is being seen as more and more important.

Co-Production is a term used to describe the partnership between people with disabilities or health conditions, carers and citizens and those who develop and run public services. While the upfront costs of co-production may seem higher; by designing services with users needs at the heart, we can significantly reduce the financial and emotional burden inaccessible services place on those with Disabilities; in turn improving their quality and way of life.

Somewhere under the Double Rainbow – Discussing Intersectionality  in the LGBTQIA+ & Neurodivergent community

An infinity symbol in rainbow colours
The rainbow infinity symbol – sometimes used to identify the ‘NeuroQueer’ community

As a queer woman with ADHD, the subject of intersectionality is one I’ve always been interested in.

There have been numerous discussions and studies about the links between people with Autism Spectrum Conditions (ASC) and Gender Dysphoria; with the theory being that there are many Trans/ gender-diverse folks who have ASC; perhaps because (in the words of an acquaintance of mine) “folks with ASC are less likely to just accept societal gender rules without questioning them when they make no logical sense”. This sentiment certainly seems to be backed up by the data; with one study of 641,860 people finding that “about 5%, of the cisgender people in the study had autism, whereas 24% of the gender-diverse people were also Autistic.

I’m Cis and I don’t have ASC; so I’m in no way qualified to comment on any possible links; and why or why not they might exist; and I will leave that conversation to people who are far more informed than I. However, what I can comment on; at least from my looking around my own friendship group and social media; is that there does seem to be a significant overlap between LGBTQIA+ folks and those who are neurodivergent of some flavour or other (although sadly there’s no specific data on this subject). 

3% of people in the UK identify as LGBTQIA+ (according to the ONS; but it’s acknowledged it’s likely to be closer to 10% as underreporting is still an issue due to the amount of stigma that still exists) but let’s just say 3% for now; and 15% of the UK population is estimated to be neurodiverse. There is evidence to suggest that neurodiverse people are more likely to be gender diverse and/or identify as lesbian, gay, queer, or asexual themselves, compared to neurotypical people. One study in 2008 found that more adults with ADHD identified themselves as bisexual compared to individuals without ADHD. Again, the predominate theory as to why more neurodivergent people identify as LGBTQAI+ is that “if you are positioned to question “norms” than you are automatically more willing to embrace a non-conforming gender identity or sexuality.”

Ok, more neurodivergent people identify as LGBTQIA+, so what? 

Well firstly; it’s important to recognise that there are lots of parallels between the experiences of neurodivergent people and LGBTQIA+ people; with some neurodivergent folks describing having to ‘come out‘ at work or to friends/family as neurodivergent; in the same way LGBTQIA+ folks have to ‘come out’ about their sexuality. Interestingly I found it much harder and got much more backlash from my parents when I told them I had ADHD than I did when I told them I was Queer. 

Being Neurodiverse, like being LGBTQIA+, also still comes with a lot of stigma; and both neurodiverse and LGBTQAI+ folks still face a lot of discrimination. There are ‘charities’ and organisations out there dedicated to finding a ‘cure’ for folks with ASC just like there are for ‘curing’ or finding the ‘cause’ of being Queer; with conversation therapy being a harmful ‘tool’ used against both neurodiverse and LGBTQIA+ people in an attempt to ‘normalise’ them.  

Secondly, it’s important to recognise that because of the above; folks who are both neurodivergent and Queer (I’ve seen this referred to in some circles as being NeuroQueer) can face double the amount of prejudice, discrimination and hurdles to overcome. As the Equality Network explains; “having an intersectional identity often generates a feeling that someone does not completely belong in one group or another, and can lead to isolation, depression and other mental health issues.” 

Many LGBT-focused organisations sadly have little knowledge of, for example, disability or race issues, which can lead to people feeling excluded or shut out of the community. In 2019 Brighton Pride faced accusations of running an inaccessibly pride event, with disabled LGBTQIA+ folks feeling excluded from attending; and they weren’t the only one facing this accusation. This has led to an increasing number of conversations happening recently about how to make Pride events inclusive to people with disabilities. 

Recognising the importance of intersectional inclusivity, “several organisations and groups in the UK have been set up to specifically cater to Queer disabled people’s needs, like Brownton Abbey, “where queer, black and brown disabled folks reign supreme”, ParaPride, who work with venues to improve accessibility, and LGBTQ+ Disabled Queer and Hear.” 

But this isn’t just something that LGBTQIA+ or Neurodiversity focused organisations need to consider; it’s also equally important for every businesses to recognise the importance of inclusivity and intersectionality when they are considering how they support their staff; or develop services for people to use. As an example, addressing issues that may affect the recruitment or retention or promotion of LGBTQIA+ folks in a way that’s not inclusive of neurodiverse people will likely not have the impact you’re hoping for; and vice versa. Sadly, only 1 in 10% organisations in the UK take neurodiversity into consideration as part of their people management procesess; and this lack of support is likely to impact Queer staff more.

As it’s Pride Month, and many organisations are considering how they support LGBTQIA+ folks better; it’s extremely important that we focus on creating inclusive environments that respect every part of people’s identity rather than focusing on singular elements of it. 

A brain in rainbow colours
A rainbow brain

(Race is another important area of intersectionality that I haven’t touched on in this blog; as a white person I’m really not qualified to comment on that so, I won’t touch on that here and will instead provide some links below and defer that topic to those with more lived experience and knowledge of the issues that need addressing.) 

Other useful links:

The managers guide to understanding ADHD

(and why it’s often misunderstood for CIS women in particular)

Let’s talk about ADHD

We’ve all seen characters with ADHD on TV and in books etc, try and think of a few examples and I bet they all fit in one stereotypical box; “the naughty young white boy acting out in class”. But not only is this stereotype wrong, it’s actually really harmful!

Calvin and Hobbs
Calvin and Hobbs (Calvin is a ‘typical’ boy with ADHD

Historically ADHD was seen as only (or as least predominantly) affecting boys (often white boys, but that’s a whole other subject I’m not qualified to talk about), but evidence shows that many girls do have ADHD, however it is often the inattentive presentation of ADHD which tends to be under-recognised or under-diagnosed, because it doesn’t fit the stereotypical (hyperactive) trope and kids with it aren’t causing problems in the classroom etc; instead they’re just being labelled as ‘day dreamers’ and are left to slowly fall behind or put under pressure to sort themselves out with no support.

Ironically, whilst the Hyperactive/impulsive symptoms are more well-known, due to being more visible, they are in-fact less common than inattentive ones, both for women and adults in general. These symptoms often become more “internal” when they persist; as adults learn to manage their hyperactivity; which historically led medical practitioners to believe that ADHD symptoms decreased after childhood, which is now known to be incorrect. Currently 2.8% of adults in the UK have ADHD, but many are undiagnosed and the number of adult diagnosis’s is increasing every year; it is believed that as many as 1 in 20 adults in the UK are likely to have ADHD.   

So, what is ADHD?

ADHD as a developmental disorder that affects the brain’s executive functions. Executive functions are the cognitive processes that organises thoughts and activities, prioritises tasks, manages time efficiently, and makes decisions. They’re basically the little office manager that lives in our heads.

Research suggests that many people with ADHD tend to be perfectionists who fear getting things wrong; they struggle to cope with failure or letting others down. Most people with ADHD are seen to be extremely empathetic to others’ emotions and suffer from Rejection Sensitivity Dysphoria (an extreme emotional sensitivity and pain triggered by a sense of falling short—failing to meet their own high standards or others’ expectations; being rejected or criticized by important people in their life.)

Many people with ADHD struggle with procrastination issues; at one time this was seen as people with ADHD being ‘lazy’ or ‘stupid’ however, research has shown that due to issues with executive functioning, people with ADHD struggle with ‘knowing where to begin’. When the size or scale of the work needed to complete things is ‘too big’, or ‘there is too much to do’ they are unable to start for fear they won’t be able to finish and will only fail or disappoint. 

This often leads to people with ADHD leaving everything to the end when a deadline looms or the amount of work becomes overwhelming, and the work cannot be delayed any longer. From the outside it can be viewing as everything being ‘rushed’ at the end rather than logically planned and spaced out to give enough time. 

However, this ‘scramble’ to complete work before a deadline, will produce a larger dopamine release as the brain views it as a bigger win vs. a scheduled timely plan, which will produce less dopamine, and therefor offer less ‘reward’. Studies suggest that ADHD brains have lower levels of the neurotransmitter dopamine (a chemical released by nerve cells into the brain that allows us to regulate emotional responses and take action to achieve specific rewards. It’s responsible for feelings of pleasure and reward.)

Due to this inability to regulate dopamine properly, ADHD brains are constantly seeking more; leaving people with ADHD with the constant desire to move from task to task, focusing on ‘the most interesting’ or ‘most urgent’ work which will offer the greatest feeling of reward; and struggling to start or complete ‘boring’ or ‘mundane’ tasks that aren’t interesting and don’t offer the ‘dopamine hit’. 

Many people with ADHD also have Sensory Processing Disorder, which means they could be ‘over-stimulated’ by sounds, sights or smells, with unexpected noises or changes in light levels etc. causing sensory overload and breaking their concentration or making it harder to focus.

How to best support employees with ADHD

Because ADHD is so misunderstood, many employers worry about disclosing their ADHD status; and many employers struggle to understand how to best support their staff. Studies suggest that adults with ADHD are change jobs frequently and are more likely to be fired, to miss work, and to have troubled relationships with co-workers; but employees with ADHD can thrive in the right environments and with the right support. There are many useful places out there offering advice on how to best tailor workplace environments so as to take the best advantage of people with ADHD’s strong points (such as their creativity or people skills), whilst also minimising any negative impacts of their ADHD; and I’ve captured many of the commonly agreed useful strategies below.

But as an employee or manager, there here are a couple of important things to note:

  • Many people (between 25-50%) with ADHD also suffer from sleep issues; and many ADHD medications can make these issues worse.
  • While ADHD medication can be beneficial in helping combat the symptoms of ADHD, medical titration can be a long process which can cause some symptoms to get worse before they get better and have many side effects.

The Scottish ADHD coalition wrote this guide for employers which offers helpful advice and guidance.

Some helpful strategies people with ADHD use: 

  • Having clear priorities, reviewed daily; with no more that 5 items on to complete at any one time. 
  • Making colour-coded lists and notes, to make it easy to find information easily. 
  • Breaking tasks down into smaller chunks that can be tackled independently rather than all at once. ADHD brains tend to work best in 15 minute intervals; many people with ADHD find setting a timer for 10 to 15 minutes to focus on one task; then when the timer chimes, deciding if they have the energy to continue on that task or, if completed, start a new timer for an additional 10 to 15 minutes. If they still feel motivated, resetting the timer and continue working in short intervals for as long as they can.
  • Avoiding multi-tasking. This is more likely to lead to distraction; only work on one thing at any time (working in 15 min chunks where possible). 
  • Setting time-limits for decision making. 
  • Setting a ‘WIP limit’ to avoid over-committing to work, For each new commitment made, giving up an old one.
  • Associating ‘rewards’ with mundane task completion, “if I complete X then I can spend 5 minutes doing Y before I move onto Z”
  • Clustering similar tasks together under the same time umbrella, i.e. Answering emails and returning phone calls once in the morning and once in the afternoon, instead of throughout the day, to avoid getting side tracked from priority work; 
  • Replaying instructions, repeating back verbal instructions, or confirming in writing to ensure they have been understood correctly. 
  • Setting electronic alarms and reminders, to remind them to move onto the next task or meeting. 
  • Setting aside time each day to deal with ‘additional thoughts and ideas that have popped up’ to avoid getting side tracked when completing tasks. 
  • Using noise-cancelling headphones or listening to music when focusing on a task. Research shows that music structure helps the ADHD brain stay on a linear path and address timing deficits.
  • Overestimating how long it will take to complete something, adding at least 10 minutes to how long it will take to finish a task.
  • Building in a 5 minute break between tasks to allow the brain time to reset before focusing on the next thing. 
  • Using a “body double.” Many people with ADHD find when tackling mundane or boring tasks, sitting with someone else who is quietly doing another ‘mundane’ task creates a productive atmosphere.

So, to sum up; Not all folks with ADHD are hyperactive boys. If you have a member of staff who has (or you suspect has) ADHD; great! Research shows employees with ADHD can be more curious, creative, imaginative, innovative, and inventive. They tend to be out-of-the-box thinkers, with an approach that can be highly prized in the workplace.

Any potential weaknesses can be overcome with just a little bit of effort and some open, honest conversations; talk to them, focus on their strengths (there are lots of them) and what they do well; and put some plans in place to help them succeed and you’ll all be happy!

5 positive traits of ADHD.

Neurodiverse parenting

One thing I’ve noticed, since I started blogging and talking more openly about being Neurodiverse myself, is how many people have reached out to me virtually or in real life to chat about how they as parents support their children who are (or might be) neurodiverse.

I’ve spoken publicly many times (especially on twitter) about the journey we’ve been on as a family to get my son’s diagnosis; and to get him the support he needs at school etc. The process to get an EHCP in and of itself was a minefield; and finding a secondary school that could not just ‘cope’ with his ASD and ADHD, but actually allow him to thrive; far harder than it should have been!

Interestingly, since joining Kainos and the Neurodiversity working group, I’ve had a number of colleagues approach me to get advice from someone, or just have someone to talk too; who has a neurodiverse child themselves and is perhaps ‘further along in the process’. Far more people in fact than have contacted me to chat about having ADHD myself.

The official services that exist to support neurodiverse children and their families are massively over subscribed and underfunded so trying to get accurate advice and support isn’t that easy. This leaves many parents and carers relying on the internet for help. If you google “does my child have ADHD or Autism” you’ll get a bazillion results back, and it can be quite overwhelming knowing where to start. They’re a millions of Facebook groups and online forums out there for parents and carers looking for help or advice on how to best support their neurodiverse children. The problem is different countries and regions do things in different ways; so what worked for one family in the US, won’t necessarily work for another family in the UK; heck the process a family in London followed won’t even necessarily be the same process that a family in Manchester has to follow.

Many organisations ask staff to disclose if they are the parent to a child with caring needs; but many parents won’t think about ticking that box unless their child has complex physical healthcare conditions, which can leave them in a tricky position (unless they have an understanding manager) when they start needing time off in order to navigate the confusing waters of getting their child a diagnosis or support for neurodiversity.

When I first started down the diagnosis pathway for my son (over 6 years ago) I was still working in the public sector, and was very lucky to have a line manager who herself was in the process of trying to get a diagnosis for her son; we were able to swap tips and advice; and she was very understanding of the multiple appointments I had to attend to try and get my son help. But I know from talking to other parents, not everyone is that lucky. Many have had to either go part time, or give up work altogether, in order to be able to support their children, let down by the systems that are meant to support them.

As we move into ‘the new world’ post pandemic, so many organisations are recognising the importance of focusing on their culture and their staff’s wellbeing; which is great to see. Within Kainos we’ve been having a number of really good conversations about how we better support our neurodiverse staff to thrive; and how we can create an inclusive culture that ensures ‘our staff who choose to remain working from home for what ever reason are fully supported.

Twitter post announcing the Kainos Neurodiversity Employee Network launch

More companies now a days are prioritising private healthcare as part of their staff offer; however, as ADHD and Autism etc. are not acute disorders; most healthcare insurers don’t cover them, nor will they cover any treatment for conditions relating too or arising from them. The ones slight exception to this seems to be Bupa. Recently, Bupa has removed ADHD from its general restrictions list which means they will now cover mental health conditions (such as anxiety, stress, and depression) even if they relate to or arise from ADHD; and they will also fund diagnostic tests to rule out ADHD when a mental health condition is suspected. 

With waiting lists for adult diagnosis averaging at 2 years+ for the NHS, and 6 months+ for private diagnosis; the picture for children isn’t much better; with the average NHS waiting list being around 18 months; but some trusts have been reporting waiting lists of up to 7 years for diagnosis and titration (where appropriate). Should you choose to go private, the costs for children’s assessments are higher than for adults; with the costs for a child ADHD assessment ranging from £700 to £1,500 for the diagnosis alone; and for ASD the costs range from £1700 to over £3,500; and while the waiting times may be shorter; not all local authorities will accept a private assessment as proof of a diagnosis or eligibility for support.

Leaving aside the process of getting diagnosed; for parents and careers there’s also the stress of trying to get your child the help they’ll need at school. The process of getting an EHCP is a logistical nightmare; and there are whole forums and sites out there dedicated to helping parents figure out how to apply for an EHCP. Even once you’ve managed to figure out how to get the ball rolling, getting the EHCP finalised and put in place as no easy task. While the law states EHCP’s should be finalised within 20 weeks; some local authorities had such large backlogs, even before the pandemic, that the process was reported to be taking over two years to get in multiple areas.

On top of that, a 2012 survey of teachers found that over 70% of mainstream teachers didn’t feel that their training adequately prepared them to teach pupils with special educational needs. It’s possibly no surprise in that case that almost 30% of neurodiverse children in 2019 were being homeschooled; and that number is believed to have gone up during the pandemic.

The pandemic has had another impact on children and young people; with the number of children suffering with mental health issues rising dramatically. Perhaps unsurprisingly, that spike has been especially high for neurodiverse children; and that in turn has been impacting their families. One study in particular noted the negative impact the pandemic has had on parents and families of neurodiverse children.

As such, as employers, we need to be considering not only how we best support our neurodiverse staff, but we also need to acknowledge the extra responsibilities and pressures our staff with neurodiverse children might be facing. We need to create a culture that supports them, so that they can balance their work and parental responsibilities successfully without having to worry; enabling them to thrive at home, and at work.