This presentation is an hour long and is good for autistic parents or parents of autistic children and any one who supports us.
Content warning for miscarriages of justice and false accusations of child abuse.
This presentation is an hour long and is good for autistic parents or parents of autistic children and any one who supports us.
Content warning for miscarriages of justice and false accusations of child abuse.
Here is proof that it is possible to define autism without all the medical model deficit based language:
Luke Beardon’s (2017) definition:
Autism refers to a neurotype that leads to a cognition that is qualitatively different from that of the predominant neurotype (PNT) in the way that information specific to communication, social interpretation and interaction is processed and understood; and to a perceptual reality of the sensory environment that differs considerably from one individual to the next
Julia Leatherland’s (2017) definition
Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity
What are people’s thoughts and does anyone have any other good definitions?
I proofread and comment on autism essays for the MA and PGCert autism students at Sheffield Hallam university (SHU) and I have found over the years that I write similar comments each year to different students. I thought if I log them here then I can share this with future students so those who cannot afford a proofreader can check their own or each others.
Here are some of the common things I notice where extra marks could be earned.
Overuse of quotes
You do not get marks for other people’s work. Use quotes sparingly, instead reword and reference the author so that you are not plagiarising. Quotes are useful when there is something special about how the person has worded it: maybe it is a really succinct definition of autism; or perhaps it is someone talking about their lived experience and using their own words seems more appropriate. As a general rule use your own words.
Underuse of critique
This obviously depends on what you are writing but certainly if you are writing an academic essay about autism you ought to be critical when referencing the work of some of the main autism researchers. Do not just accept theories or the findings of research even if they are well known and embedded in society. Be critical of practice too where necessary. We have had nearly a century of bad autism research, harmful interventions and autistic people are still leading unnecessarily difficult lives. The general population believe we lack empathy and emotions and that it is ok to train us to behave like non autistic people even though this sometimes may drive us to suicide. It is important to acknowledge this history of bad research. If you are doing the courses at SHU you will probably find it is in your marking criteria that you need to critique.
Overuse of secondary citations
Try and avoid secondary citations, instead look up the original author and read their work for yourself then use their work as the reference. (By the way, most academics do not read every word – skim reading or getting the gist of a paper/book is a useful academic skill and one some autistic people may find particularly challenging as we love the details). Use secondary citations when you really cannot access the original reference.
Beware of subconscious bias
Usually authors are referred to by their last names in academic writing. Sometimes people use first names too and I have noticed there is some (probably subconscious) bias in when they choose to do so. I see autistic authors referred to with both names more often than non autistic authors – especially when the reference is about their lived experience. I think consistency is important so I point this out where I see it.
Include the autistic voice
If you are writing about autism you need to refer to more than academic literature as sadly academia is not accessible to many autistic people. Sure there are plenty of autistic academics but many of them have to hide in the closet and they are not representative of autistic people on the whole. So I recommend the inclusion of other forms of communication – blogs, vlogs, podcasts have loads of valuable information. Social media is a good place to find autistic people (I have even referenced tweets in the past).
Here is a fab resource for finding autistic blogs – it has a search function too so you can find a blog post about pretty much and topic relating to autism
Check the marking criteria
I have read some fab essays about autism that had nothing to do with the learning objectives and so would not have got a pass mark. So sad when you know people will have spent such a lot of time on them and it is a great piece of writing.
I don’t intend to point out common referencing mistakes as there are too many but I will let you know my favourite referencing website – it is just so simple and easy to use with handy examples:
If you cannot find what you need in there then google is your best friend. You will also find that there are sometimes multiple ways of referencing the same thing – don’t stress about that. It’s just how it is and either way will likely be fine.
Good luck with your essay writing
Caveat: These are just my views as an ex student and current helper on the autism courses at SHU – I do not work for SHU and the marking criteria changes sometimes.
This book is an easy to read introduction to the basics of autism. It is aimed at adoptive and foster families and therefore a lot of the second half discusses the complexities of attachment and trauma when combined with autism. Many autistic people have experienced trauma, so I believe the book is useful to a much wider audience than that which it targets.
The book begins by explaining autism in an easy to understand manner, which is more challenging than one might think as there are so many myths and unknowns when it comes to autism. Different people have different (and often very strong) views on the ontological nature of autism. Fictional children are used to illustrate points throughout the book which I enjoyed. It was another aspect which makes the book more accessible than many autism books. I like the use of illustrations throughout the book. In particular the balloons which were used to illustrate what is meant by the ‘spectrum’ worked well. The spectrum is often conceptualised as linear – from mild to severe – but the balloon illustrations and the written description help to demonstrate that the spectrum should be considered more like a 3d constellation where each autistic person has their own version which can change throughout their life.
The importance of an individual approach to supporting children is emphasised and there are many practical strategies for parents and carers to try. I was pleased to see a reasonable amount of information about supporting the child’s sensory needs as this area can sometimes be neglected, yet for some people it is one of the most disabling aspects of autism.
The authors demonstrate a good understanding of the controversies and politics around language such as words like ‘disorder’. However, they sit on the fence somewhat by using both identity first and person first language (e.g. ‘autistic child’ and ‘child with autism’). Whilst it is true that research shows there are many different language preferences amongst different autism communities, there is now a lot of evidence that autistic people, in the main, prefer the more positive identity first language (Kenny et al., 2016). I felt like an opportunity was missed to inform readers about the importance of listening to the autistic voice. With this in mind, sections or examples from autistic adults would have been an excellent addition, in particular those who have experience of adopting and fostering either as a child or foster carer.
Whilst the beginning of the book has general information about autism and how to support your child, the later chapters are more specific to adoptive and foster families with transitions, attachment and trauma covered in a similar accessible style with lots of practical advice.
Although this book is aimed at adoptive and foster families it would be suitable for all parents of autistic children.
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442,462.
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:
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.
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.
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.
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.
I won’t post detailed results seeing as I am planning on publishing them but there were 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 (EDIT: It has now been accepted for publication in May 2021). 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.
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 with 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.
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.
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
First stage – set up
Your mailbox will have three spaces. The processing folders, the reference folders, the inbox
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
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)
5. Voluntary work
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:
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