Making a Complaint

by Nicky Watkinson.

Having a bad experience sucks. Whether it’s poor customer service, an interpersonal interaction gone awry, or straight-up discrimination, there are lots of scenarios when a complaint is called for.

There are a number of barriers that prevent people from making a complaint – such as believing it will be ineffective; not being sure whether what happened is complaint-worthy; low self-esteem; social conditioning to silently accept uncomfortable situations – and even once these are overcome, the complaints process itself can often be overwhelming and confusing. This blogpost is a basic guide to complaints: why you should complain, and where to begin. It will be regularly updated, and will be accompanied by some template letters that you can adapt to your own needs.

 

If you want to complain, complain

 

As autistic people, we’re often trained to be apologetic and not “make a fuss”, but legitimate complaints are important. Most organisations take complaints seriously and will try to rectify the problem once they’ve been alerted to it. Even if your complaint doesn’t result in immediate change, it helps build a body of evidence for the future.

It is vital that we combat the myths around complaining. It’s natural to worry that you might be overreacting or misreading (especially if you’ve always been taught that the fault for any negative social interaction is with you, as an autistic person). However, if you had a bad experience, then you had a bad experience. Whether or not it seems like it’s “worth” complaining about is irrelevant; if you feel upset, angry, or even just confused, that is worth attention.

If you find yourself dwelling on an interaction more than a day or two after it happened, or complaining about it to people in your day-to-day life, or if the thought of it makes you anxious about future re-occurrences, then those are all signs you should complain. It might be worth thinking of complaints as a process of notification or providing feedback, rather than complaining – the word “complaint” has a lot of negative associations, and it can sound quite strong, which can be off-putting if you feel like it’s just a small thing. But if you frame it as a comment rather than a complaint, it can be easier to go through with – if you were the person in question, or the head of the organisation, wouldn’t you appreciate feedback?

The best case scenario is that you get an apology, your money back or some other appropriate compensation, and the bad thing never happens again. Even if it turns out that the complaint is unfounded – we’ve all misread things, whether neurotypical or not – you’ll hopefully get some clarification of the situation, and some closure.

 

The process

The key to complaints is going about them in the right way. Most of the time, a complaint is made after the fact, to someone who was not directly involved in the incident (I am assuming that if you’re reading this piece, you’re probably not one to immediately kick up a fuss with the person in question). The process will vary depending on the nature of the complaint and the organisation, but here are some pointers for figuring out where to start, and some resources to help you along the way.

 

 

  • Determining what kind of complaint or comment you want to make

 

Did you experience something completely awful and obviously discriminatory? You’re probably going to want to frame that differently to a comment about something small, e.g. how signage in a venue could be improved. Think about what grounds you have for the complaint or comment – is what happened illegal, or borderline illegal? Are you advising the organisation of a change they can make so that their customers have a more positive experience? Be clear on this so you know what tone to take, and what kinds of templates to model your response on.

 

  1. Determining the recipient of the complaint

This will vary quite a lot depending on the situation and the organisation. The first thing to do is check the organisation’s procedures for complaints – some venues will have dedicated customer comments email addresses or phone lines, others will direct you to the department in question. Exactly what you say in your complaint will have to be adapted based on the recipient – if your words are going to be seen by the person in question, that requires a different approach to if you’re complaining to a third party such as their line manager or a dedicated complaints department. If you can’t find any information on the organisation’s website or printed materials, contact their general enquiries team or reach out on social media – the best way to approach this is to ask “hey, where should I direct complaints / comments / feedback?”, rather than to launch in with the complaint.

 

  1. Drafting the complaint

There are lots of resources online for making complaints, some of which are linked below. Some things to think about are:

 

  • Tone: there’s a fine line between assertive and aggressive, and it’s important to stay on the right side of it. Don’t attack the person reading your complaint, especially if they aren’t directly to blame! Keep the tone as calm as possible – it’s fine to talk about how you feel (“I felt like I wasn’t being listened to”, for example), but it’s important to state this as plainly as possible and without aggression (“all your staff are terrible and should be fired” probably won’t get you anywhere!). Equally, don’t be too soft: make it clear that this is a complaint (or comment) that you expect them to act on – if you are writing an email, using “Complaint” in the subject line is a good way to both grab attention in a crowded inbox, and to be explicit about the fact that you expect them to take it seriously.

 

  • The facts: state, clearly and concisely, what happened. Give as many pertinent details as you can (where, when, who, etc), but try to keep it short as well. They don’t need a blow-by-blow account of the interaction or problem – they can contact you if they require more information – but it is good to give an overview (e.g. “In the lobby, at roughly 2pm on Tuesday 8th April, I was told I couldn’t breastfeed by a male staff member with a shaved head and glasses.”).

 

  • Outcome: what do you want to happen? What do you think is likely to happen? Company policies, if these are available online, are useful here, because they give you an idea of how the organisation plans to deal with incidents like this. It’s tempting, especially when we’re upset, to leap to extremes, but it’s important to be realistic – unless an employee did something extremely bad, constituting gross misconduct or illegal behaviour, they are unlikely to be removed from their post. Likely outcomes are things like giving the employee a warning, placing them on a probationary period, and retraining (either the employee or the whole team / organisation). Specify whether you are just raising the point for their information, or whether you expect a particular outcome: do you want some form of compensation, or an apology, or assurance that the organisation is reviewing its practices? This is useful information for the person reading the complaint, as it gives them something to act on.

 

  • Next steps: Do you want to be notified of the outcome of your complaint? If you don’t see evidence of them responding to your comment, will you escalate it to an external body or go public? It’s good to explicitly say that you expect a response within a certain (reasonable) time frame, as again this gives the person reading your complaint something to work with: e.g. “Please do keep me informed about the steps you’re taking to resolve this issue. I would appreciate a response within five working days.” (If you then don’t hear back within this time frame, I would suggest one follow-up email or call before escalating the complaint.)

 

  • Escalating the situation: if you don’t hear back from them within the time frame you set out, or they don’t respond appropriately, what will you do next? Options here include making a public complaint (e.g. on social media), or reporting the person / organisation to a third party.

 

Put all this together, and you have a complaint!

 

For further resources and template complaints via letter and telephone, visit our follow-up article inThe Vault (Citizens only).

Trans and Autistic – Resources

Many members of the autistic community are transgender, non-binary, and/or gender nonconforming. Many of us have unique experiences and perspectives of gender. Here are a few resources:

Overview

Statement by Autistic Self-Advocacy Network, National Centre for Transgender Equality, and LGBTQ Task Force on the Rights of Transgender and Gender Non-conforming Autistic People (2016)

Sexual Orientation, Gender Identity and Asperger/Autism by the Asperger/Autism Network – General overview of some of the ways autistic people experience their sexuality and gender identity.

Personal experiences

Gendervague: At the Intersection of Autistic and Trans Experiences – Lydia X. Z. Brown

How Our Society Harms Trans People Who Are Also Autistic – Katelyn Burns

Science

The Link Between Autism and Trans Identity – Article in The Atlantic on how autistic people who are trans may be prevented from accessing healthcare because of their neurological status. Interesting fact: “The study found that participants on the autism spectrum were 7.59 times more likely to “express gender variance.””

Living between genders: A in-depth study of research into gender variance and autism from Spectrum.

Autism Traits in Treatment-Seeking Transgender Adults (2018) – Autism Research Centre sponsored article looking at whether there is a correlation between trans people registered at Gender Identity Clinics and autistic traits.

Abstract:

“The present study aimed to compare prevalence of autistic traits measured by the self-reported autism spectrum quotientshort (AQ-short) in a transgender clinical population (n=656) matched by age and sex assigned at birth to a cisgender community sample. Results showed that transgender and cisgender people reported similar levels of possible autistic caseness. Transgender people assigned female were more likely to have clinically significant autistic traits compared to any other group. No difference was found between those assigned male. High AQ scores may not be indicative of the presence of an autism
spectrum condition as the difference between groups mainly related to social behaviours; such scores may be a reflection of transgender people’s high social anxiety levels due to negative past experiences.”

More background information one of the authors, Anna Nobili, who is doing her PhD on interpersonal issues for trans people transitioning: http://programme.exordo.com/epath2017/delegates/presentation/32/

 

Some autistic trans people to check out

Seranine Elliot, a musician, model, and activist: Bandcamp, Facebook

Alistair H, artist and activist: website (fr) YouTube (fr)

Asharah Saraswati/Art Twink, artist: FacebookInstagram

Shain Neumeier, attorney, advocate: websiteTwitter

s.e Smith, writer, editor: websiteInstagramTwitter

Lydia X. Z. Brown, advocate, organizer, writer: websiteFacebookTwitter

Making It Through the Holidays Relatively Unharmed

Many of us dread the holidays season for many reasons from family troubles to blaring Christmas music and flashing lights. Here’s a few survival links to help you plan ahead to avoid as much unnecessary trauma as possible.

If you are traveling or just going to visit, this will help you through the planning process.

How to Attend to Attend Family Gatherings When You’re Autistic

This is a lovely blog post viewing your participation and their respect for your needs as gifts.

Autistic Gifts and Expectations

The day of a family gathering consider some exercise, meditation time, or gentle music to ease your stress. Try to relax. The less you start off, the less you accumulate throughout the day.

By now you’ve got preparations down, so now it’s just family or friends to get through. Hopefully, this is the pleasant part, but for many of us it isn’t. If you have a toxic family you can’t avoid, try to remember it is only for a limited visit. You can leave if you need to. Try to keep the conversation light. Avoid controversial topics or subjects of family disagreement. Refuse to engage in blame games, but forgive yourself if they rope you in. Know you can also walk away for your own mental health. *You are not required to engage in painful or triggering conversation just to please others.* Repeat that previous sentence as often as you need.

I also try to prepare aftercare ahead of time. Do you need a dark room and silence? A small treat? Exercise? Just something to be kind to yourself and help you unwind. These two may already be part of your regime for regular life as it is for me. But if you aren’t thinking ahead, you may struggle to release the stress when you return home.

Hope you have a happy, safe holiday. We’ll have more for you next year.

 

 

Why Join the Empire?

The Autistic Empire is a new institution that aims to provide services for autistic adults. There are currently many autistic-led organisations that act as liaisons between the autistic community and the neurotypical world, seeking to change public policy-making in our favour. There are also many medical, social and campaigning organisations that are run by neurotypical people who may or may not consult with autistic people to determine who they are and what they should want, and allocate resources and strategic priorities accordingly. Both of these strategies assume a power hierarchy with neurotypical people at the top and ourselves either asking to be let in or negotiating the terms on which we are accepted.

The Autistic Empire aims to create autistic-majority spaces where much of the stress and feelings of marginalisation that come from our door-knocking for acceptance can be alleviated and our people can concentrate on self-development and fulfilment, the development of our people and community and mutual support networks that are meaningful and conceptually based in the way that we see and interact with the world. There are a number of autistic advocacy organisations that exist doing good work to protect all of us, but they are primarily advocating for publicly funded interventions. It is our belief that the autistic people is made up of a hugely diverse crowd of people, some with disabilities, some who do not lead independant lives, and many who do have financial and social independence and have no need of publicly funded interventions. We all have problems that we face in our day to day lives, like everyone who is human, but the way we approach and solve them is often different to neurotypical people.

The Autistic Empire is a place for autistic people to get together and share what they have found works for them, to allow other autistic people to benefit from people who have been in the same position, and to develop tools and services that facilitates people to be happy and content.

Much of the work of the Autistic Empire as it currently stands has been informed by our interactions with autistic people who have been creating homemade coping strategies that we want to provide on scale. Our Q+A, for example, was built when we realised that people were posting questions asking for autistic people’s perspectives on social scenarios, or how to do something, to their personal social media feeds. We want good answers to be accessible by the world. Our Grand Sensory Survey was built while we were trying to figure out whether you could use autistic people’s sensory experiences as a more effective form of identifying autistic people who might never think it necessary to spend two hours explaining their childhood habits to a clinical psychiatrist, and couldn’t find any research on just what people experience and how that is different from neurotypical people. This article was written after a conversation with a friend who said they weren’t interested in being around other autistic people and why should they join?

Other ideas that people have input to us that we are planning to investigate:

  • How autistic parents manage being hypersensitive to sound and the sound of children screaming – we’re going to create a podcast episode with an autistic parent to advise on this and other aspects of parenting from an autistic perspective.
  • Living with other people when you don’t like other people but you can’t afford to live on your own – we want to put together a guide on common solutions people have found to managing your relationships with flatmates and potential sources of conflict such as sharing bills, cleaning, and mental health problems.
  • Travelling while autistic – we want to publish an article on how people have found solutions to standing in enclosed spaces, managing artificial lighting and loud noises, and the ever-present reality of constantly getting lost.
  • A speaking tour employing autistic adults to explain autism and answer questions to parents of autistic children.
  • A customisable autistic alert card that people who need them can select the information that is specific to their experience of autism instead of generalisations of what autism is.
  • A weekly course giving autistic people in geographical proximity who grew up without certain life experiences to visit common social spaces such as bars or swimming pools in a supported environment, and to develop social skills and friendship networks with other people on the course that they can stay in touch with when they graduate.
  • Non-verbal autistic adults – up to a third of autistic people do not speak. These numbers are likely to be much lower due to the unknown but huge numbers of undiagnosed autistic people, but non-verbal people still make up a huge and neglected segment of the autistic community. We have been unable to find any support groups or representatives of non-verbal autistic people other than some small localised groups or exceptional individuals who have been published. The reports of these individuals is that it is assumed by nearly all professionals and those who interact with them that because they cannot speak, they have severe mental disabilities, and therefore it is not useful to try to help them to communicate in other ways. This is completely unacceptable. The position of the Autistic Empire is that you do not have to talk to communicate, and we plan on reaching out to non-verbal autistic people to offer them citizenship, consult them on their needs and integrate them fully into our autistic-majority spaces.

There are many, many conversations taking places all over the world on these kinds of issues, as autistic people problem-solve with ingenuity, inventive thinking and panache. We are not here to reinvent the wheel. We want to gather together what people have learned, share tools that already exist and apply our own knowledge to build tools that everyone can benefit from. We want to create infrastructure that autistic people can use to make their lives better, so they can get on with the business of being happy and do what they want with less stress, less anxiety, and less depression.

Maybe none of this applies to you and you have no need of these services. Brilliant, how did you do it? Enrol now and help others to be where you are. We’re planning on starting a peer mentoring service for autistic people with more life experience to support autistic people with less. We’d love you to take part. We are one people and we need to take care of each other.

Why the name Autistic Empire?

We have spoken to a huge number of autistic people at all levels of society, ability and need. We found that across the spectrum (ahem), people feel bad about being autistic. They have low self-esteem and low mood. Some of this is just the result of minority stress. We want to go in the other direction, to say that you as an autistic person have skills and talents that non-autistic people don’t have, and we think that’s great. You are great. The use of the term empire was to invert the general power dynamic of autistic groups seeking acceptance from a neurotypical society, to an empowered community, moving forward, in command of its own destiny.

Doesn’t the organised autistic community already exist?

It does. But there are also an unknown number of autistic people who live without diagnosis or knowledge of who they are but because they may be employed, in relationships, or otherwise moving through neurotypical society without the “impairment” necessary to be picked up by social or psychiatric services, who have no autistic identity or contact with other autistic people. It is our experience that there are significant numbers of autistic people who are integrated into neurotypical society, who do not consider themslves disabled, but who nonetheless have a feeling that something is “different” about them. Like the LGBT community, many of these people have, on finding out they are autistic, expressed relief to have finally received a conceptual framework and vocabulary for these feelings of difference and to initiate some kind of relationship to the organised community.

We want to identify, reach out to, welcome and integrate these people into our tribe and to create autistic-majority spaces into which they can feel like they belong and from which they can derive benefit. Policy-making for our community, and its financial sustenance, will be impossible as long as a significant segment of our people remain unknown to us. As far as we are aware, the autistic community relies on people who have already been told they are autistic finding them. We want to go find everyone else.

So join us!

Enrolment is open now, and only costs £9 a year!

So you think the MMR jab is dangerous…

 

This was originally published for another autistic website, now defunct, circa 2013.

Probably one of the greatest banes of my life as an autistic person on the Internet is watching the arguments go round and round over whether you should give your child the MMR vaccine. Maybe you agree with some of those who claim that you shouldn’t because it “might cause autism”. Here at the Autistic Empire, we’d like to share five facts with you that we hope will allow you to make up your mind.

1. The man who came up with the “MMR causes autism” theory has been struck off as a doctor.

Andrew Wakefield, or to give him his full medical title, Andrew Wakefield, published a paper in 1998, claiming they had identified a new syndrome which they called “autistic enterocolitis”, raising the possibility of a link between a novel form of bowel disease, autism, and the MMR vaccine. The authors noted that the parents of eight of the twelve children linked what were described as “behavioural symptoms” with MMR, and reported that the onset of these symptoms began within two weeks of MMR vaccination.

What Mr Wakefield failed to mention was that he had illegally and unethically conducted his research on his child subjects without their parents’ consent, that he had been given £55,000 by one legal group, and £450,000 by another, to find evidence against vaccines, oh, and that he’d frankly just made up a whole bunch of his results. The General Medical Council removed his licence to practice as a doctor in 2010 – he has now moved to America where various interest groups are funding him to continue in his claims.

 

2. The journal that published his research retracted it and apologised for not checking its numerous errors.

After a decade of scientists attempting to replicate the original study and failing miserably, The Lancet finally admitted in 2010, conveniently just as the GMC ended Mr Wakefield’s career permanently, that they were retracting the paper completely and admitted that it should never have been published because of the numerous errors in the methodology and results. Basically, it was rubbish, but apparently no-one noticed until we’d had numerous measles scares and at least one thirteen year old boy died.

 

3. Andrew Wakefield stood to make $43 million a year from scaring parents away from the MMR vaccine.

An interesting argument from some anti-vaccine advocates is that Andrew Wakefield, in doing his research, was taking a stand against Big Pharma and highlighting the damage that their quest for profit was wreaking on our nation’s children.

The reality of the situation is that Andrew Wakefield filed a patent without his employer’s knowledge claiming he was working on a single vaccine that would have made £4 million a year if he had succeeded in proving the MMR vaccine was unsafe. He also planned to sell diagnostic kits that he estimated would make him $43 million a year trying to diagnose “autistic enterocolitis”, an illness that doesn’t exist.

The reality is that Andrew Wakefield wasn’t taking a stand against Big Pharma – he is Big Pharma, who used his status as a scientist to prey on the anxiety of parents to put their own children at risk of an infectious and deadly disease so he could make millions of dollars.

 

4. Measles kills 158,000 people a year – mainly in areas that don’t have universal vaccinations.

The government does not generally like to just hand out free stuff – they do it when there is a compelling reason that that free stuff stands to have an immediate, measurable and dramatic impact on the public well-being. In Ireland, vaccination was introduced in 1985. There were 99,903 cases of measles that year. Within two years, the number of cases had fallen to 201. That is a serious public health benefit.

However, some people cannot be vaccinated – because they are allergic, because they are too sick, and other reasons. Those people are reliant on the “herd immunity” of the rest of us to ensure they stay safe; about 95% of the population needs to be vaccinated to prevent outbreaks of disease. After the MMR vaccine controversy, that level dropped to just 78% in some age groups – who are most at risk of contracting measles now. In 2013, there was an outbreak of measles in Swansea, Wales: 1,000 people, mainly under 18s, caught measles, 100 were hospitalised and one 25 year old died. Of those who have become sick, the vast majority have been unvaccinated.

If you choose to refuse to have your children vaccinated, you are not only putting them at risk of a disease that stills kills 430 people a day worldwide, you are putting other people’s children at risk who have no choice over whether they can be vaccinated or not.

 

5. The MMR VACCINE DOES NOT CAUSE AUTISM AND EVEN IF IT DID THAT WOULD BE BETTER FOR YOUR CHILD THAN DYING FROM MEASLES, MUMPS OR RUBELLA.

…just to be really clear about that. There’s nothing wrong with being autistic. It’s a lot more fun than being dead, I’m guessing.

So please, 
vaccinate
your

children.