Functioning labels and autism

Content warning: mention of suicide

It is very common to hear autistic people described as mildly autistic or severely autistic. Or perhaps high or low functioning. Or you may hear questions like which ‘end of the spectrum’ are they on? Probably one of the worst examples I have heard was when a parent told someone their child was autistic and the person replied ‘the good kind or the bad kind?’

When the spectrum was first described by Lorna Wing she never intended it to be seen as linear from mild to severe. It really is better seen as a wide variety of peaks and troughs in ability. The word spectrum is useful to emphasise the diversity of abilities amongst autistic people but functioning labels are problematic and here are some reasons why:

  1. High functioning often means ‘able to mask’. In other words able to ‘fit in’ and hide one’s difficulties. We know that masking can be a predictor of mental health problems and suicide. If someone is struggling so much with being autistic that they end up dying from suicide we should not be describing their autism as ‘mild’. Suicide rates are highest amongst those who would be described as mildly autistic.
  2. Low functioning is often used when a person has an additional learning disability or is unable to speak. IQ is unrelated to autism, though it may affect one’s ability to mask. Not masking hopefully means that autism is spotted earlier and support is provided earlier (not always the case). It is better in my view to recognise that a person has a learning disability or needs support finding alternative communication to speech rather than a generic description of ‘low functioning’. This is the only way the appropriate support can be put in place.
  3. Functioning labels lead to incorrect assumptions. If a person is intelligent enough to do a degree some assume that mistakes in other areas such as not being organised enough to meet deadlines is just laziness. It may be executive dysfunction and the person may need support with that. On the flip side I know people who have had their ability to understand underestimated just because they do not speak. Sometimes adults speak in front of non speaking children, for example, as if they also cannot hear or understand. Autistic people generally have what is known as a ‘spiky cognitive profile’ – we may excel in some areas whilst really struggling in others. This needs recognising or support needs will not be met.
  4. It is important to recognise ability to function changes over one’s lifetime and even day be day or hour by hour. I know someone who would be described as ‘mildly’ autistic because they have two degrees, a family and a job. However, they make many mistakes at work due to executive dysfunction, have got through many jobs over the years, have difficulty speaking when they are tired or anxious and at times in their life have had big violent meltdowns. Most of the time their anxiety is extremely high so it does not take much additional stress for them to meltdown and stop functioning completely albeit temporarily. It would not have been so hard for that person to have ended up homeless, unemployed or in prison. Sometimes the difference between functioning and not is on a knife edge and circumstances and luck are a big factor. Attributing functioning ability all to the person makes it too easy to blame them when things go wrong rather than providing support.

This sort of simplistic language gets used everywhere in autism literature and support services and I can see the attraction as people want a quick way to describe someone whether that be in their school notes or in healthcare. I believe the risks of doing this outweigh the benefits. When supporting an autistic person you really need to get to know them and adapt support to meet their individual needs.

Here is an excellent comic that I often direct people to when talking about ‘the spectrum’ or functioning labels: The art of autism – understanding the spectrum.

Autistic Mutual Aid Fund

Gillian Loomes and I have started a fund to support autistic people who do work for the autistic community such as training or speaking at conferences. During this time of global coronavirus emergency many have lost all of their income.

To read about the new fund, to donate or apply for some money have a look at the gofundme link below. Any support is appreciated.

Reflections of autistic parents who home educate their autistic children

As part of my MA in autism I also did some primary research on the reflections of autistic parents who home educate their autistic children. I was interested in this topic as an autistic mother to two autistic children who both have been home educated when mainstream education did not work for them. It was noticeable when I got involved with the home education community just how many people were autistic, both parents and children. Mainstream education in its current format just does not work for some children. No other research had been done on this topic at all and I felt it was important that we tried to understand why so many autistic families end up home educating. There is research on home education and disabilities more widely but I was specifically interested in the views of autistic parents.

The research was a qualitative study using semi-structured interviews. Four participants were interviewed. The requirement to be a participant was that they were an autistic parent who had home educated their autistic child or children. The two main themes which I identified using content analysis were ‘health and school withdrawal’ and ‘school experiences’.

For every participant in this study the main motivator for school withdrawal was a significant decline in mental health and wellbeing. This was the case in my own personal experience and is consistent with other research on home education. Signs of stress such as ‘school refusing’, ‘meltdowns’ and ‘self harm’ were mentioned. One mum described the self harm of her five year old:

“He kept trying to put his fingers down his throat, he threatened to throw himself down the stairs and he tried a few times. He tried to throw himself into a stinging bush, a stinging nettle bush so that he could get out of going to school. Anything he could think of really, it was horrible, absolutely horrible.” 

Overwhelmingly the children’s school experiences were negative which concurs with the literature on home education. Parents described teachers dismissing their concerns, disbelieving diagnoses and not implementing support (even in two cases where it was recommended by an educational psychologist).

Every parent described a ‘last straw’ event which had followed a lengthy period of stress and trying to make school work. This varied from a disagreement over support (e.g. a flexi-school request being denied) to an extreme meltdown such as the following:

“One day they called me at (work) and said we just can’t calm her down and my dad wasn’t around so I drove there and it took me about an hour to get there and she was still in full meltdown when I got there.  She’d taken her clothes off, I didn’t even recognise her when I saw her, she was in a terrible state and the teachers had no idea what to do with her so I calmed her down and I called a crisis meeting … she couldn’t go back to that school because it was detrimental, it was damaging her … mental health and at that time she didn’t speak at home, she didn’t speak to anyone. She came home and she read, she didn’t function.” 

With regard to their own autism parents described situations where it had both benefited and hindered them. Some examples of benefits were empathising with their children’s struggles, good attention to detail (with reference to the paperwork for an EHCP) and not caring about breaking societal ‘norms’ (e.g. children should go to school).  Talking about the negative aspects one parent said she was told by a teacher that she appeared anxious – she perceived the implication to be that her anxiety was causing her children to be anxious. As an anxious autistic parent, I have also had this experience.

This was a very small scale project but gave some important insights into why some autistic parents home educate. It was not intended to be a representative sample of autistic parents. The participants came from a specific group who had ‘chosen’ to home educate. (We are down in government stats as people who have chosen to home educate but I do not consider it a choice – I was forced to home educate to save my child from PTSD or other serious mental health problems). There are autistic children who are happy and well supported at school but this project was not attempting to research their experiences.

My research showed what the majority of us in the home education community already know. Autistic children are heavily disadvantaged at school, they often are not given appropriate support and home education is an option that can keep them safe.

The pros and cons of autistic parenthood

As part of my MA in autism I did some primary research on autistic parenthood. I am in the process of preparing this for publication but for now here is a short summary.

I completed a qualitative study with 6 autistic parents as participants and I interviewed them to get their perspectives on the pros and cons of being an autistic parent. The word interview is used quite loosely – I did not just offer a traditional face to face research interview, I wanted the autistic person to be able to communicate in the way that worked best for them. Two of them chose a written format.

Why I chose this subject?
If you google autistic parenthood you mostly find links about being a parent of an autistic person. The same applies if you search the academic literature – there is so much research about how hard it is to be a parent to an autistic child (not so much from the child’s perspective unfortunately). There was some research happening in Cambridge (now published; Pohl et al., 2020), I had a PhD thesis by Burton (2015) and that was pretty much it for my literature review so I had to look at more general literature about being a disabled parent. I know of a PhD that is currently being done on autistic motherhood (by Paula Sanchez) and I was a participant in somebody’s PhD research about autistic parenthood at the university of Sheffield so hopefully we will see more published soon.

Apart from the dearth of research on the subject and the obvious need, the other reason for my interest is because I am an autistic parent and my experience does not fit at all with the stereotypes you hear about autism and parenting. Mostly people assume we make bad parents and it certainly is not true in my case or for many of my friends. I wanted to make sure my research explored both the positives and the negatives of being an autistic parent.

Results
I won’t post detailed results seeing as I am planning on publishing them but there were a some key themes which I will mention.

Every participant had had negative experiences with professionals. One mum had been accused of fabricating and inducing illness in her children (used to be called Munchausen’s by proxy). It was nonsense and the mum was later fully cleared but the stress of it was immense and had terrible consequences on the whole family. Since doing my research I have come across many other mums (it is almost always the mum) that have also been accused of fabricated and induced illness (FII). Three parents were concerned about losing their child(ren) at one point. Only two parents had had any positive experiences with professionals. The relationships with professionals were extremely concerning.

Empathy was an important positive for the autistic parents. All had at least one autistic child (this was not a pre-requisite of participating but it is not entirely a coincidence either as parents often realise they are autistic because of a child’s diagnosis). I would be interested to know if the fact that their children were autistic was why empathy was considered as a positive. It surely must be much easier to empathise with (e.g.) a child having a meltdown if you have experienced one yourself. Research on this and Milton’s (2012) double empathy problem would be interesting.

An area where these parents seemed as though they would benefit from support was executive functioning (an umbrella term for a number of cognitive functions such as planning and organising, impulse control, working memory). Some autistic people do not have executive functioning difficulties, it isn’t a core part of autism as such. Many of us do struggle in this area though. Whether this is because we are autistic or because of the many things that can co-occur with autism, no one really knows. Stress, anxiety, lack of sleep can all be responsible for cognitive problems. I have muscular dystrophy (apparently this co-occurs with autism though I still only know children with both – no adults). Myotonic dystrophy (the kind of muscular dystrophy that I have) can cause ‘focal dementia’ which increases with age – so that is another likely reason for my executive dysfunction. Lots of us have ADHD or dyslexia too. At the end of the day it does not really matter why some of us have these difficulties but once identified it would be great if there were some support available.

The write up of this research is currently being prepared for publication. It was a 12k word dissertation and I need to get it down to only 4k for the journal in which I would like it to be published. I have spoken about it at conferences or at workplaces (e.g. a CAMHS department) quite a lot already. Get in touch via this website if you think a talk would be useful at your workplace or conference.

Identity first or person first language?

This topic gets discussed so often amongst autistic people, our families and autism professionals. Most of us are probably bored of the subject but I wanted to write down my view so that when I get asked to consult on other people’s projects I can link to this as my justification for why I always recommend identity first when talking about autistic people collectively.

1. I prefer ‘autistic person’ because I see autism as in integral part of my identity. ‘Person with autism’ implies that I could remove it. I can’t and would never want to. When you are thinking of autism as separate to the person, you are medicalising it and then you get into territory like finding cures. Cure is a dirty word for many autistic people. To me, suggesting I cure my autism is as offensive as suggesting I cure my personality. (Note: I know there are some autistic people who want to be cured but that is for a future blog post).

2. Person first language is considered by some as polite, because the person is ‘more than their autism’. I am more than being a woman, a brunette, or a mother but no one feels the need to use person first language for those parts of my identity because they are not seen as negative. If you are concerned about this then you must have a negative view of autism (as most people do unfortunately). People are trying to be nice when they say I am more than autism, but to me that should be so obvious it does not need pointing out. Autism is not a bad thing, I am not ashamed to be autistic, so I do not feel the need to distance myself. True some aspects of being autistic are annoying (like the stigma and being spoken over) but on the whole I am happy as I am. I would never want to stop being autistic. I am autistic, I am me. What is polite when talking to individuals, however, is to respect their personal choice. Personal choice should always trump the community’s preferred choice.

3. Professionals: But we are trained we must always use person first language.
Me: Yes most professionals still are, but your training is out of date as this is no longer the preferred choice of most autistic people.
Also many professionals were trained a few decades ago and don’t keep up to date. They then go on to train the new starters with their out of date perspectives. This is why including the autistic voice is so important with any training. Engaging with the autistic community is essential for all autism professionals.

4. There have probably been a few million twitter and facebook surveys about person vs identity first language and they always show that we autistics tend to prefer identity first language. ‘Twitter is biased though’ is the response and it is a completely fair response as social media is completely biased and we all have our own echo chambers. We now have some academic research that says similar though (Kenny et al., 2015). Most academic research also has flaws and biases but they are different ones at least, yet the result still shows the same preference. The Kenny et al. (2015) research looks at the preferences of professionals and family members too, but I think the preference of autistic people is what matters most.

5. Some big organisations are now starting to switch to identity first language. Whilst this should not be a deciding factor, in my view, I mention it regularly as some professionals take a bit of convincing when I suggest they change the language they use in their workplace. They can’t believe that they should change what they are teaching their undergraduates just because I, a mere autistic person, tells them they are out of date. I am just one person, how do they know that is what other autistic people think? So I show them that the NHS now recommend identity first language. The national autistic society use identity first language too. It irritates me that people listen to big non autistic led charities or organisations ahead of autistic people but sadly that is how it is and I’m happy to use those organisations to make my point.

6. The language an organisation chooses to use, is a clear indicator of whether they listen to autistic people. Most who are still using person first language either have no clue that preferences have been changing for some time now – that is a bad sign as you should have autistic people involved in meaningful roles in every part of your organisation if you are supporting or serving autistic people in any way. Alternatively it could be that they work wit parents the most and the parents may prefer person first language. I think that is an even worse sign as although parent’s needs are important, we have to be aware that they often collide with those of their autistic children. As a parent I am fortunate as I have had the benefit of many years of studying and learning about autism – few get that opportunity. I am also autistic, which has been a huge advantage when parenting my autistic children. I always try and keep this in mind when parents tell me I should use ‘person with autism’ about myself. I strongly disagree though.

Email organisation for stress reduction

In recent years I have been trying lots of different strategies to help with my executive functioning difficulties, with varying amounts of success. I thought I would write on my blog about some of the things that have worked for me in the hope that it may help other neurodivergent or disabled people who also struggle with executive dysfunction. This post it about organising my email – it has been a huge success and I feel more relaxed and organised already.

The problem

I had thousands of emails in my inboxes, many unread, many were junk mail and some were 15 years old! My usual strategy has always been to use the search function to find emails that I need however, as my memory declines this no longer works as it relies on remembering that you even received the email, never mind the name of who sent it or something contained within it. My work and personal life have changed over the years too and I no longer work on individual large projects for one client, I have many things on the go all at once. Another complication is the multiple ways people contact me now. Many requests for help come via social media channels or text, whatsapp or messenger. Everything felt out of control, I was missing out on opportunites, accidentally ignoring people, wasting time and being unnecessarily stressed.

A possible solution

I came across a book called ‘How to be a productivity ninja’ by Graham Allcott in an audible sale. I was happily listening to it and on getting to the email chapter, I was inspired to get started straight away.  Here is a summary of his email organisation system, it is incredibly simple but takes a bit of an investment in time at first (though not as much as you might think).

A few comments about this new system

  • Your inbox will become a temporary holding place for emails to arrive and be processed, the aim is to get it to zero every time you go into your email
  • You won’t ‘check’ your emails you will ‘process’ them
  • Turning off all notifications and just processing them a couple of times a day (or whatever is appropriate for your circumstances) will reduce your distractions. Better for you to be in control of when you manage emails.

First stage – set up

Your mailbox will have three spaces. The processing folders, the reference folders, the inbox

Processing folders

Create three folders called @Action, @Read and @Waiting.

@Action is for anything where you need to reply or do something (and it will take longer than two minutes)

@read is for anything that you need or want to read (but in your own time rather than when it lands in your inbox)

@waiting is for emails where somebody else needs to do something and you want to keep track of progress but don’t need to do anything yourself

Reference folders

Set up folders for emails you need to keep as reference. These will be personal to you but the aim is to have as few as possible as this will make your filing much quicker and ironically it will make emails easier to find. Nowadays email search functions are good so it is recommended to use that within large folders rather than have many subfolders.

I will use my set up as an example:

1. Confirmation (for all confirmation emails of things like train tickets, online shopping)

2. Finance (makes tax returns easier if these are stored together)

3. Personal (for all family and friend related emails)

4. Work

5. Voluntary work

6. Academia

7. Landlord

8. Uni students

Old stuff (I used this to save old folders that I don’t use any more)

Z_reference (for anything that doesn’t fit elsewhere)

The first three and z_reference were all recommended in the book. Z_reference is recommended so that you aren’t tempted to make new folders for individual emails which will eventually overcomplicate your email storage.

Second stage – Hacking

This is the first part of getting your inbox to 0 emails. 

Sort your inbox by date and the book recommends selecting emails older than 6 months and move them to a folder called ‘email death row’. These will be deleted at some point in the future when you feel comfortable that you don’t need them. I actually did two years because of some important emails that stay in my inbox until tax return time and I deleted them straight away because I usually will have filed any that I know I need to save in folders so I wasn’t too worried about any important old emails being deleted.

Then sort your inbox based on sender and delete whole chunks based on the sender. For me this got rid of loads as there were some companies who had been sending me regular marketing emails for years. Or there were colleagues and recruitment consultants from a previous career.

The book then suggests then doing it based on subject but I didn’t.

Third stage – Processing one by one

By now you will have drastically reduced the number of emails. Go through the remainder either:

  • Replying or actioning them (if take less than two minutes, no point clogging up your @action folder)
  • Moving to your process folders: @action, @waiting or @read
  • Moving them to your reference folders
  • Or deleting them

Fourth Stage – Completion

Allcott describes two kinds of completion. Inbox to zero which he aims to do every single time he shuts down his email. And complete zero where there is nothing in the inbox or the @action folder and you have paid some attention to the @waiting and @reading folders. He aims for complete zero once a week. I have not achieved this yet but I do get to inbox zero every time I go in my email. No email hangs around in there any more.

And that’s it! 

One annoying thing to note is that on my mac’s email, I went from over 5k emails in one email account to zero in only 1.5 hours. However, it turned out not to be so easy – lots of them came back! After googling I discovered it is a common bug and I dealt with it by working directly from my yahoo email via my browser. But even there I had to not delete too many at once and then wait patiently before trying to do the next chunk or it couldn’t cope. So it took much longer than I had hoped but still it has been worth it. I feel less stressed already.

‘How to be a productivity ninja’ is full of so much more than this and I intend to implement many more strategies. If I like them, I will write about them on my blog. The ‘to do’ list system and his way of capturing and collecting ideas and actions looks good. As I haven’t implemented this yet, and my email is so organised, I now screenshot important messages that I receive in alternative ways, emailing the picture to myself and then processing via my email. This usually involves capturing any actions to my existing ginormous, complicated and stressful to do list. This is a temporary solution which means I remember to do things but I am looking forward to not needing this as I implement more strategies in the near future.

Let me know in the comments if you decide to try it

Welcome to my new blog

Hello!

Welcome to my blog. I have started it as a place to write about my interests, and things that I think will help people in my community.

Expect to find my musings on autism, neurodiversity and disability, maybe some academic writing and updates on projects. My academic interests are autism and particularly the large number of false accusations of fabricated and induced illness (FII) which many autistic mothers (and non autistic mothers of autistic children) are coping with. I know far too many people where FII has been insinuated as a way of frightening them to stop asking for support for their children. In other cases they have been outright accused and child protection proceedings have begun for completely unfair and unethical reasons. Sometimes they appear to be malicious accusations and other times down to misunderstandings about autism. Expect that topic to appear a lot on here. I read a lot (well listen actually, I like audiobooks) and I may use this blog as a way of summarising what I read, both to make it accessible to other people and to help me process and remember it. My intention is also to write about strategies I am trying to improve my life and to deal with my cognitive impairments (probably also strategies I have helped others use).

I expect this blog will be varied as I have my fingers in a lot of pies. If there is anything you would like me to write about let me know by commenting or emailing me via the contact page.

Bye for now – Shona