Following the response from Kirsty Williams regarding the documented guidance for supporting pupils with Additional Learning Needs and/or Disabilities during COVID-19 lockdown we conducted a Wales-wide survey regarding any contact they received from their LEA and/or school regarding hub childcare provision for their statemented child.
We received a total of 189 responses from most counties across Wales (with zero responses from Merthyr Tydfil and Wrexham). The results have been analysed and we have produced a report of its findings. You can read the report in full here.
Key finding are:
76.2% of all respondents had no contact from their school and/or LEA to determine whether or not their statemented child required a hub placement
Of the 189 responses, only 27 were in the shielding category, therefore this was not a reason for non-contact
Children who attend specialist settings or a specialist base within a mainstream school made up 49% of the responses, but 66% of those contacted regarding hub provision
We accept that some schools may have conducted in-house reviews of children, however the guidance states that parent/carers should be involved in the process, and lockdown with schooling at home is a vastly different environment to typical schooling. Therefore, in-house reasoning may not have been accurate.
Our findings have been sent to Kirsty Williams. Should you wish to comment on this matter, or if you would like your views to be raised in our meetings with Welsh Government, please email email@example.com.
As part of our online focus group sessions, we will be holding discussions around education. If you’d like to join the mailing list to be notified of these sessions, please use this form.
Kat Williams has given us consent to re-post her article Autistics Against ABA. The original dated 2nd May 2020 can be found on her website, CerebrationofKat.
Today (2nd May 2020), I was asked to write about ABA, providing evidence as to why it should not be promoted. While I’m willing to do this, particularly because I haven’t actually written a post specifically on ABA before (I mean, let’s be honest, I’d be adding to the hundreds already out there), this does not negate the time, mental energy, and sheer frustration that comes with (yet again) a person from a marginalised group being asked to do the leg work when a simple Google search would provide all of the information.
That said, I did offer to educate and this is a more permanent form than just replying to a Facebook post. From here you can expect references to ABA, abusive practices, and suicide.Therefore, if you will find any of these topics triggering I suggest you stop reading. I do hope, however, if you’re a non-Autistic (or non-disabled in general) person, you do read this in its entirety. It’s taken a lot of hard work, and I don’t really want it to be wasted.
There’s already so much literature out there so I’ve added a list of articles where you can read about this in more depth at the end of this article. I’ve marked those which are (in my opinion) the best ones to get a full overview of why ABA is – in all its forms – abhorrent. It doesn’t matter if it’s original Lovaas ABA ‘bad ABA’, or if it’s ‘good’ ABA which doesn’t use punishment such as electric shocks, or if it’s something used on Autistic people, or (as I’ve learned today) with children who have Cerebral Palsy. It’s all bad. Period. It would not be acceptable practice with non-disabled children, and gay conversion therapy (which is based on ABA) has been declared unethical, so I cannot fathom why it’s still considered appropriate to use ABA to try to ‘normalise’ disabled children.
Very often people who don’t know much about ABA outside it being ‘controversial’ will say things like “I can’t judge another parent’s choice,” or “People can choose how they want to parent their children.” My counter argument is simple: if I were to suggest that you could smack the disability out of a child you would judge. Rightly so.
“Your character is based on the way you treat the people you’re ‘allowed’ to mistreat” – David Sedaris
So, why is ABA bad anyway?
There are a number of reasons, but I will confine my answer to the top 10. I’m going to refer to Autistic people in this article, but please know that it doesn’t mean that these issues are solely Autistic related. If you’re using ABA with a person who has Cerebral Palsy or any other disability my points still stand:
1. It teaches the person they’re ‘wrong’ They need to be fixed
Repeat after me: Autistic people are not broken non-Autistics.
We have just come out of the other side of Autism Awareness (Acceptance) Month, yet we still have to tell people this. Disability does not diminish a person’s worth. The whole premise of ABA is to make Autistic children indistinguishable from their peers. This in itself should be a ‘red flag’ as therapeutic practices are supposed to help the person being treated. Therefore, ABA’s “goal of specific beneficence is to help individual people, […] is undermined by making people into someone they’re not” (Wilkenfeld & McCarthy 2020).
Well-meaning parents and professionals typically look at this (and the other arguments) and respond with “but you didn’t have ABA, so how do you know it’s abusive?” To paraphrase Chris Bonnello (Autistic Not Weird) if people can educate themselves to know that smoking is bad for you without trying it for themselves, they can educate themselves about ABA.
Another frequent argument is “you’re not Autistic like my child.” I’m not going to delve into this fallacy here, I’m going to take it at face value. Yes, I have a slightly above average IQ. Yes, I’m mainly verbal (sometimes I’m not, but I write about that in other articles). However, intellectual/learning disability and apraxia of speech are not valid arguments for ABA. Parents and professionals often claim that their Autistic child/patient ‘can’t communicate’ so needs ABA to learn how to do so. However, “it commonly turns out that “non-communicative” autists frequently communicate perfectly well—they merely communicate in ways to which people might not typically be sensitive” (Wilkenfeld & McCarthy, 2020).
Parents often want to know why their child behaves in different ways to their non-Autistic peers. I’ve been there, I do understand to a certain degree. However, “researchers do not tend to study why neurotypicals don’t behave in certain ways” (Wilkenfeld & McCarthy, 2020), and this approach just feeds into the premise that the Autistic way of being is wrong; it’s something to be studied, unpicked, and rebuilt. Regardless of how distressing the process of ABA is for those subjected to it, “perhaps a greater injustice is in simply treating ASD as something that merits elimination in the first place” (Wilkenfeld & McCarthy, 2020). Despite the difficulties faced by Autistic people in a world not designed for them,
“we would do well to focus our energies on eliminating the basis of that burden rather than in eliminating the underlying trait.” – Wilkenfeld & McCarthy, 2020
2. ABA addresses ‘symptoms’ not underlying causes
Behaviourism focuses on just that: behaviour. Meltdown? Behaviour. Stimming? Behaviour. Aversion to sound? Behaviour. Co-occurring conditions such as pica or ARFID? Behaviour.
The function of ABA is to eliminate these behaviours to make the Autistic person appear more ‘normal’. However, the underlying reason for said behaviours is not addressed.
Let’s take eye contact as an example. I’ve chosen this because it shows how Westernised ABA is too – eye contact is considered part of polite social interaction here, in parts of the East, it’s considered rude. Eye contact can be at best distracting, at worst physically painful for an Autistic person. Auditory processing disorder could mean it’s essential for one Autistic person to look at someone’s mouth to understand what they’re saying, and for another, looking in the opposite direction could mean they’re taking in what’s being said rather than getting lost in the multiple shades of green which fleck the hazel eyes of the person speaking to them.
This is one area in which the ABA practitioner doesn’t try to find the whys. They insist on eye contact, and the child can only have their reward when they do. This leads me onto…
3. It removes and destroys autonomy
In a world in which people are being told to ‘be themselves’ and children are being praised for not ‘following the crowd’ it seems nonsensical that Autistic children are being taught the exact opposite. Conformity above all else. No is not an option.
As ABA tightens its noose around the Autistic’s individuality by using operant conditioning and behaviourism, it begins to “alter children’s identities by preventing them from forming and pursuing their own passions;” it’s “teaching them how to blend in rather than exercise their own unique capacities” (Wilkenfeld & McCarthy, 2020). A lack of sense of self is often reported by Autistic adults, and it’s easy to see why. If they’ve been subjected to ABA it’s been trained out of them, if they haven’t they’ve often forced themselves to mask to try to fit in. Very rarely do I meet an Autistic adult who can state unequivocally that they’ve been their authentic self for their entire life.
“An ABA intervention will be considered a success if and only if it results in a desired behavior, regardless of what is going on in the mental life of the child. [… T]his is done in a way that overrides the child’s natural inclinations and does so via at least moderately coercive methods. To paraphrase one person with whom we spoke, if “ABA” just involved giving praise when the child does something good, you would be able to forgo years of training in favor of a lesson that could fit on a greeting card. There might be someone somewhere who practices ABA using only positive words of encouragement, but this is simply not what past recipients of ABA have reported (Kupferstein 2018).” – Wilkenfeld & McCarthy, 2020
4. ABA leaves people open to abuse
Once you teach a child that no means they will be punished until they say yes – either in the traditional sense in which something negative happens to them, or solely through the withholding of a wanted item – you are leaving them open to abuse.
Parents will share memes like this:
while defending (or at least not criticising) ABA. This isn’t just ironic, it’s ludicrous.
ABA is teaching an Autistic child that their body isn’t their body. They’re being taught that they must have physical contact with someone, even if they don’t want to. They’re being taught that they are not allowed to give or deny consent. The proponents are preventing that Autistic child from being able to keep themselves safe for the rest of their lives. At best they’ll be unable to spot toxic friendships until it’s too late, at worst they will be abused.
5. Many people who were subjected to ABA meet the PTSD diagnostic criteria
Scientific evidence to support this is still in its infancy. This isn’t because it’s not out there, it’s because it’s taken this long for a) the first wave of Autistic children subjected to ABA to become adults, and b) for those people to be listened to. That said, research is being conducted, and an early study “noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic” (Kupferstein, 2018). This supports anecdotal evidence from the Autistic community in which Autistic adults, both those who are speaking and those who are non-speaking, have written extensively about how they have been traumatised by ABA. I have included many of these articles in the further reading list at the end.
“Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA,” and that “Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers.” – Kupferstein, 2018
This alone should demonstrate the potential harm, yet ABA practitioners and parents vehemently try to deny the claim. This in itself is abusive as it’s (again) telling the Autistic person that their experiences are wrong and/or not real. Just like ABA in practice, in which Autistic children are taught that they don’t really detest the feel of jelly, they just need to touch it every day for several hours to get over it. Both the ABA practitioners at the time and the people denying the resulting PTSD are gaslighting the Autistic person.
6. ABA teaches masking, which is a proven suicide risk
Let’s be clear: ABA does not make an Autistic person non-Autistic. Its ‘success’ is in its ability to make an Autistic person mask their Autistic way of being (or traits). Masking is not only exhausting and a completely unauthentic way of living, it is one of the “risk markers for suicidality unique to ASC” (Cassidy et al, 2018).
Suicidal ideation and completion of suicide is already overrepresented in the Autistic community:
“In a large sample of 374 adults newly diagnosed with Asperger syndrome (AS; autism without language delay or intellectual disability), 66% had contemplated suicide, significantly higher than the general population (17%) and patients with psychosis (59%); 35% had planned or attempted suicide , higher than previous estimates of attempted suicide in general and university populations (2.5–10%).” – Cassidy et al, 2018
and as this study shows, Autistics who mask are at higher risk again. ABA is designed to force the mask on when we should be encouraging our Autistic young people (as well as the adults they become) to take the mask off and love and embrace themselves for who they are.
7. Length of time a child is in therapy
Autistic children who are in ABA are often subjected to 25-40 hours per week of intensive practice. Children start ABA as young as 2 years old. That’s 25-40 hours in which they cannot make a free choice. They’re not playing as they want to. They are having to conform to hours of operant conditioning while their non-Autistic peers are playing in sandboxes, having naps, and scribbling with crayons. They’re being robbed of their childhood, working hours which would floor most non-Autistic adults.
8. It’s not ethical
Behaviourists have to equate autism to cancer to get ABA studies past ethics boards:
“When a judge, or Dr Maurice, or any behaviourist yells cancer, any ethical consideration for autistic people obediently hurries to the nearest exit.” – Dawson, 2004
This is because they know it’ll eliminate the ethical questions of consent – “a project presuming to transform the nature of unconsenting clients through behaviour interventions must be challenged as to its ethics” (Dawson, 2004) – and ABA gone wrong, such as those Autistics “injured and killed in restraints” (Dawson, 2004). If autism is presented as equal to a disease which kills without radical, objectively harmful to the body, treatment, then the suggestion of intensive hours and removal of autonomy doesn’t seem that bad. If it ‘cures’ the Autistic child of this ‘thing’ that’s stolen their life, then ‘the ends justify the means’.
This is, of course, a strawman. Autism doesn’t kill. Autistic people often get killed too young, but it’s not being Autistic that’s done it. It’s how they’ve been treated (when they die by suicide) or the lack of support (why they die by the hands of their caregivers).
Therefore, the ethical questions need to be placed back on the table. However, when questioned about obtaining consent from Autistic people regarding being subjected to ABA, Dr Gresham, a pro-ABA doctor, “found the idea of autistics being involved or consulted in legal, research, or treatment decisions absurd–like consulting with the mentally-retarded” (Dawson, 2004). If this is the public opinion of ABA proponents, I shudder to think about what their actions are when alone with vulnerable Autistic children.
“Challenging the autism-ABA industry’s ethics requires that autistics are seen as human beings with human rights. We do not live in a society that acknowledges this. We are in a society in which autistics have rights only if and when we resemble non-autistics.” – Dawson, 2004
9. It’s not about the needs of the disabled person, but the needs of society
Something I invite the pro-ABA (or undecided) parents reading this article to ponder is this: are the things you’re trying to ‘fix’ problems for the Autistic child, or problems for you? Are they truly issues which need remedying, or are they being seen as issues because of societal norms? To the Autistics subjected to it, ABA “at least appears to have inherited its foundations’ interest in societal benefit at the expense of individual rights” (Wilkenfeld & McCarthy, 2020).
A huge amount of behaviours seen as being without purpose, such as intense interests and stimming, are immensely helpful for Autistic people. Therefore, having interests withheld until the Autistic child performs a task they are either finding physically difficult or just really mentally don’t want to do is cruel. Preventing an Autistic person from stimming only serves to dysregulate them. The ABA practitioner isn’t doing anything to help the Autistic person, they’re making them more palatable to society. (Yes, I know that not all ABA practitioners stop children from stimming. Please don’t #NotAllABA me, the rest of what they/you do is awful anyway.)
Other things ABA practitioners work on are Autistic children eating appropriate foods. Performing self-care tasks in a manner society would approve of. Getting them ready for the outside world, rather than getting the outside world to at least meet the Autistic in the middle. At no point are the views of the Autistic person considered. Nobody is using their wellbeing as a unit of measurement for success. “Making decisions for patients for the sake of bettering society seems immediately suspicious from a modern perspective … as doing so places comparatively little emphasis on good of the patients themselves” (Wilkenfeld & McCarthy, 2020).
“ABA places an undue burden on autistic children is by defining therapeutic success primarily in terms of autists’ ability to fit into normal societal structures.” – Wilkenfeld & McCarthy, 2020
10. It doesn’t really work
Even with the unhelpful measures of success, ABA doesn’t work in the way it claims. Yes, it forces some Autistic people to act less Autistic, but it doesn’t ‘cure’ them of autism, how could it? You cannot change who someone inherently is, but you can force it into a dark cavern of their mind, a place they’ve learned to hide it and be ashamed of it.
A literature review of ABA effectivity studies was conducted in 2013. “Most of the literature review papers conclude[d] that the intervention programs are controversial, expensive and dependent of external variables” (Fernandes & Amato). They found that control groups were often not used – something which is essential to determine whether or not what is being tested is effective, or whether there is a placebo effect.
A more recent study shows that “conflicts of interest are prevalent but under‐reported in autism early intervention research” (Bottema‐Beutel et al, 2020). This means that there is a lack of transparency and the claim that ABA is evidence-based needs to be challenged.
“There is not enough evidence of ABA’s preponderance over other alternatives.” – Fernandes & Amato, 2013
To sum up
ABA has been described as “an extremely negative experience” (Wilkenfeld & McCarthy, 2020) by a huge number of Autistic adults who have been subjected to it. Chris Bonnello (Autistic Not Weird) did a huge survey in 2018 which showed that the Autistic community is against ABA, with 34.16% of all respondents and 53.48% of Autistics saying they would not recommend its use. Please note that the vast majority of the remaining percentages weren’t pro-ABA. A large percentage of the respondents abstained from answering. Only 13.92% agreed with ABA overall, and 5.19% of Autistics.
As “the standard measures for autists’ success make very little mention of the subjective well-being of [Autistics]” (Wilkenfeld & McCarthy, 2020) it is hard to claim that any outcome is an objective success. Sure, the Autistic child may now give eye contact, eat a few more things without vomiting, and communicate by speaking, but is a lifetime of thinking that they’re inherently ‘wrong’ worth it? Is a lifetime of PTSD the price you’re willing to pay for conformity?
It’s national advocacy week, so we thought it was an ideal opportunity for us to talk about what advocacy means to Autistic UK, and how we let that focus our work. The West Virginia University Centre for Excellence in Disabilities cite three types of advocacy:
Self-Advocacy – advocating for yourself
Individual Advocacy – advocating for individuals g. assisting someone in a medical appointment
Systems Advocacy – advocating to change policies or laws to benefit the wider community
As stated in the About Autistic UK CIC section of our website, we do not seek to represent Autistic people, rather we aim to ensure that Autistic people can represent themselves. Our aim is to equip Autistic people with the tools for them to be able to self-advocate, to provide training, advice, and signposting to reduce the need for individual advocacy, and our main focus is on spearheading wider change through systems advocacy. We believe that society needs to move away from the idea that other people need to speak for the Autistic community, and we are working to develop systems to enable Autistic people to speak to us to ensure as many Autistic voices as possible are heard.
Autistic UK believes that organisations – be them public or privately owned – should be transparent. We also believe that we are not exempt from this. Therefore, we want you to know what we’re doing to work towards our goals, and how we’re doing it.
We think it’s important for everyone to know our set up. We have seven executive directors and are chaired by Willow Holloway. All directors are neurodivergent, most are Autistic (6/7), most of us are also parents/grandparents of Autistic and otherwise neurodivergent children, and we are all working on an unpaid voluntary basis. At present we are also completely unfunded, and the directors are paying to keep the company operating as the coronavirus pandemic has meant that funding streams are particularly difficult to find. This means that while we would love to be involved in everything we’re notified about, we have to ensure that we don’t spread ourselves too thinly, which would affect how effective we are at what we do.
Autistic UK believes that the term advocacy is often misunderstood by wider society, and we are therefore refocusing on the term representation. In order to be effective systems advocates we must adhere to four approaches: engagement, representation, co-production, and participation. In order to break down the representation barriers with the Autistic community, we must listen to the Autistic community.
Autistic UK is user-led and we engage with the Autistic community in a number of ways to ensure this happens. We are always looking for new ways to ensure we reach – and listen to – as many people as possible. During the pandemic we have been unable to engage with the community face-to-face, so our engagement has included:
Focus groups with a new topic to be discussed each month. So far we’ve connected with Autistics and allies (always ensuring one of the sessions is for Autistics only) to find out how the pandemic has affected them, their experiences of mental health and relevant services, and whether or not attendees believe Autistic voices are being heard. Invitations to these sessions are first sent to those who have expressed an interest, followed a few days later by being advertised on social media. Our next focus groups will be about Autistic experience of education.
A number of our directors sit on advisory panels and forums who want us to represent the views of the Autistic community. As our aim is to ensure the community can represent itself, we use the information gathered during our engagement with the community (with consent and anonymised unless otherwise requested) to inform our responses, both to written consultations and in the meetings we are part of, and use co-production (which is expanded on in the next point). Some examples of where we help Autistic voices be heard are:
National Institute for Clinical Excellence
National Health Service England and Wales
National Police Autism Association
Various Disability Organisations
European Council for Autistic People
Co-production is a crucial element in getting Autistic voices heard, particularly by those who have ignored them. Autism research, for example, needs to be led and driven by the Autistic community to ensure that outcomes aim to makes lives better for Autistic people (social research) rather than being focused on cause and/or treatment which can lead to eugenics (medical research). Therefore, we are working with universities and other research bodies, such as the Ministry of Defence, to ensure they are prioritising the needs and expectations of the Autistic community.
For Autistic UK, co-production doesn’t end with other companies and organisations giving us a seat at the table. We want to ensure that other Autistic organisations and individuals have the opportunity to have their say. For example, if we hold a stakeholder position which allows us to respond to consultation documents, we welcome the opportunity to submit a collaborative response to ensure those who do not have their own channels can use ours to make sure their views are included.
In order for us to stay true to our principles, we are expanding on the ways the Autistic community can participate in the work that we do, particularly for those whose voices are currently not heard. We are in the process of writing our application form for our advisory groups which will be split into three categories:
Autistics in professions such as teaching, medicine, accountancy etc.
Autistic led organisations
Individual Autistic advocates
These will be advertised across our social media once the forms have been finalised.
Over the next few weeks, we will be releasing articles giving more information about the work we’ve been doing. If there’s anything you think we should be getting involved with, or that you’d like to bring to our attention, please send us an email to firstname.lastname@example.org.
I loved this book (dystopia is my ‘bag’) and it was refreshing to read about neurodivergent written by an actually neurodivergent author. It was far more relatable, didn’t smack of ‘inspiration porn’, and was an honest account of the pros and cons having particular neurodivergencies brings to life, particularly in post-apocalyptia.
I’d say the target audience is 13+, but as with all good YA fiction, adults of all ages will enjoy it too (if the genre is what they’re in to). The pace was fast enough to keep my ADHD brain interested, but the plot was developed enough that you didn’t feel short-changed at the end. It also left me really wanting to read the sequel, which is the hallmark of a great book.
As I told the author when I first read Underdogs last year: regardless of the fact this novel is set in post-apocalyptic Britain, the heroes are all disabled children, and they had access to quite impressive weaponry, the most unrealistic part of the plot was that all of those children were in a specialist school, so must have all had statements/EHCPs. It’s a stark reminder of how the real education system is failing a cohort of children similar to those found in this book, and it makes me wonder if that specialist input and nurture is what gave them the tools to try and save the world.
This book is really good. It’s straightforward, has a great layout, was clearly well-researched, and lifts up Autistic voices. Yenn Purkis has contributed so much great insight and knowledge regarding the intersection of autism and mental health, and this book is a credit to them.
It loses half a star for using person first language, and references to functioning labels (including lots of the use of Asperger’s). I’m guessing it’s more a symptom of when it was written (and possibly done to please the publishers), but some would find the language used frustrating and/or triggering.
I love what the book is doing though, and have learnt from it.
This is one of the most comprehensive, objective, and eye opening books about autism I’ve read. I read a lot about autism (research is my ‘special interest’), and this has blown most things out of the water (see – we can learn figures of speech).
What I love about this book is that it doesn’t pick a side. It’s not written with a political agenda, nor is it preaching to people to conform to a certain way of thinking. It’s facts, it’s research, it tells all of the theories and gives them all the same amount of paper and ink.
Now, anyone who reads it and still thinks ABA is a good idea, or that autistic people should still be in institutions awaiting a cure, is either heartless or didn’t understand what they were reading. If it’s the latter, I suggest you read it again, and listen to actually autistic people in your lives to find out why those things are the opposite of what you should strive for. Silberman has provided the facts, the research, and the testimonials; it’s up to you to use your critical reasoning skills to make an informed choice.
I went through many emotions whilst reading the book, from joy right through to physical pain. I read the section about eugenics aloud to my boyfriend, and I was sobbing so much he invited me to stop reading. I didn’t. In my opinion, it was essential to embrace that upset and discomfort so that I (and he) can ensure that we don’t get back to that place; something which is frighteningly possible with the likes of Autism Speaks at the forefront of autism research and promotion.
This, I feel, is essential reading for all. Not just autistic people and their families, not just those who work professionally with autistics; everyone. Unfortunately that brings me to my only negative. The book is extremely well written, however the language is overwhelmingly high brow. I’m an English student with an obsession with reading all things neuroscience, and there were a lot of words I had to look up to fully understand. I fear this will exclude a lot of people from accessing the book, and I wonder if there’s a way around this. Perhaps a simplified (but not patronising) abridged version would be a potential project in the future.
I absolutely loved this book, and read it in two days.
As I read, I saw myself in the pages far more than I ever have before. I know that being autistic gives us a commonality, but I didn’t expect to see so much of my experience in a book written by someone I follow on Twitter. From the time I read that Laura finds sameness an anchor, and that she can’t listen to music while needing to concentrate because the lyrics mix with thoughts “and it becomes a confused mess,” I knew I was going to enjoy the book.
I relate to the way Laura’s sensory issues make the world so confusing, and often assaulting, to live in. I agree that silence to others isn’t actually silent, and like Laura, sensory bombardment has led me to leaving wherever it is I’m supposed to be. For me that’s usually the supermarket.
I have the same (possibly obsessive in my case) need to research things immediately. I cannot let it go, and my phone is constantly at my side so I can Google whatever pops into my head. I too need to be distracted from the millions of thoughts whirling around my brain, and use compulsive checking of messages and social media as a distraction from them.
I always thought people were being metaphorical when they told you to “picture a beach,” or similar, when leading a guided relaxation practice. I’ve since found out about aphantasia, and though I do see fleeting images, I empathise with Laura’s struggle to form a mental picture of those you love.
I too create a sort of ‘social story’ whenever I need to go somewhere new by looking up everywhere I go – hotels, offices, train stations etc – on the internet so I know what they’ll look like. I recognise Laura’s need for clarity and to know what’s happening, coupled with a need to be in control without wanting to be controlling.
I share her relief of finally getting the answer in adulthood as to why I was so different. I have also experienced the feeling of not wanting to exist; to have not been born. I also find talking exhausting when anxious, and her description of the weight of words resonated with me, as did her inability to stick to things if she doesn’t get immediate results.
This is, at the time of writing the review, the book about being autistic I have related to the most. The most glaring difference between our experiences is that I feel emotions at an almost unbearable level, to the point that I have wished I could stop feeling altogether. I do often struggle to accurately label them though, and therapy has taught me that I feel them so explosively because I don’t recognise the build up – only the climax.
I was slightly uncomfortable at the inclusion of person-first language, though this typically surrounded input from professionals working in the ‘autism business’, so it could be over-spill from their wording. I also cringed at the amount of input Tony Attwood had (considering how unhelpful he’s been for the autistic community in the past), but I must admit I agreed with what was included in the book, so that’s more my problem than anything else.
I would highly recommend this book to autistic women, their partners, and those who love them. I’d also recommend it to professionals, particularly those who still maintain that women can’t be autistic, and those who equate those who can work, have a relationship, and be a mother as having no support needs. It’s clear that Laura has some quite significant support needs (as I do) yet it’s much harder to get them recognised.
I’m sad that I got the book on Kindle. I couldn’t find a print copy on Amazon, but I’d love to buy a print copy so I can lend it to people, but so it can also sit on my bookshelf as I feel a need to have physical copies of books, particularly ones I love. This would have taken residence next to Neurotribes, my favourite ever book about autism, though this is a very close second.
This is a comprehensive book in which (mostly) Autistic (including non-speaking) members of the Neurodiversity Movement write about how they, and the organisations they work with, have contributed to creating a world which better caters for Autistic people’s needs.
While this book chronicles the Neurodiversity Movement, there aren’t any entries which come from outside the autism world. While the title is prefaced with ‘Autistic Community’ so this shouldn’t come as a shock, it would be good to see a similar piece of work which includes a wider range of contributions from people with other Neurodivergences (NDs). That said, there are contributors (such as Monique Craine) who have multiple NDs, therefore there is some representation.
I agree with Knapp’s decision to edit with a light touch so that each author’s style isn’t lost and NDs (such as dyslexia) are not hidden, it did mean I enjoyed reading some chapters more than others, despite each having an interesting subject matter. There were some author’s styles I just didn’t get on with, but I haven’t dropped the star rating because they held my attention, and I think that it’s a personal preference matter rather than because they were inherently ‘worse’ than the chapters I enjoyed reading more.
I learned a lot of history about the Autistic community which I didn’t know, such as the Autistic involvement in the DSM-5 revisions, and I was impressed with how involved we’ve been in some incredibly important pieces of work – truly nothing about us without us.
I was fortunate to be involved in a webinar this week hosted by the European Council of Autistic People through my director’s role with Autistic UK, and a number of authors and organisations from the book were also in attendance. I’m looking forward to working with them in the future, perhaps as we pioneer the next big positive change for Neurodivergent people in Europe.
If you’re interested in either the Autistic or Neurodiversity Movements, I highly recommend you read this book. If you’re a teacher, medic, work in government or third sector roles steering policy, or are an autism (or other ND) researcher, you *should* read this book to help you understand why we repeat: Nothing About Us Without Us.
Note: This book is open access. You can access it here.
This book is one of the most beautiful pieces of poetic prose I’ve read in a long time, and I’m studying literature. Beginning with Saturday 21 March – spring – Dara takes us through an entire year of his life as an Autistic naturalist.
I bought the book to add to my collection of works by Autistic authors, and while I’d read a lot of praise prior to reading it, I didn’t realise just how excellent it is until I’d started reading it myself. By the time I reached May I bought a copy for a friend of mine who has an Autistic son who is also fascinated by (and very well-versed on) nature, not only because it’s an excellent book but also because her son reminds me of a younger version of Dara and I thought he’d enjoy it too.
Though I wasn’t diagnosed until I was in my 30s, I can relate to Dara’s experiences of school (in his first school anyway) and I too sought solace in wild places, though this changed when I moved from my grandparents’ house in the countryside to the city I live in now. There was a large period of time where I lacked a connection with the natural world, yet even when my visits were sporadic and fleeting, I’ve always found a sense of calm when surrounded by green and cocooned by a canopy of trees.
Since reading, I’ve encouraged my children to spend time searching for nature wherever we can find it. Our tiny concrete courtyard garden is filling with pots of tangled plants and trailing vines because I forgot to buy trellis (I’m not a natural gardener), but it’s also full of woodlice, butterflies, ants, bees, and finches. Through taking the time to explain the wonders of the natural world, my older boy (also Autistic) is no longer frightened of bees, accepts that wasps do have an important role in the circle of life, and will go for walks in the woods without much complaining. My younger son (also Neurodivergent) has always been a nature lover, but we’ve spent more time together watching nature documentaries, going on bug hunts, and searching for “baby ducks” whenever we’re near water. One of his proudest moments during lockdown is helping me rescue a ladybird from drowning in a water feature, and then checking on it regularly to make sure it was still okay.
This book has made me appreciate the world around me more freely and openly. In a world where we’re constantly rushing, it became too easy for me to forget to really see what it has to offer. I’ve seen more butterflies, birds, and bees since reading Dara’s diary, and I don’t think it’s purely because there are physically more of them. I’m looking for them. Watching them. Truly appreciating and connecting with creatures which used to flit past my peripheral vision.
The beauty of Dara’s words match the beauty of nature, and I’m genuinely sad that the book had to end.
Somehow, Tooth and Nail managed to be even better than the first book in the series, and I’d already given that one five stars.
I read the first book in a day and initially thought this would be the same. I was wrong. Not because it didn’t grip me (it did); not because I didn’t want to know what was going to happen next (I did), but because I needed time to process what I was reading.
I was far more invested in the characters. I really cared about them, and I needed space to think about what they were going through before I could move on to the next part. At one point I actually rage quit because I couldn’t see something coming, and it really shook me.
I can’t write too much without inadvertently spoiling the series so far, so I’ll end with this: I wish I had the Underdogs series growing up. I love the books as an adult, but pre-teen/teen me *needed* them.
I highly recommend this series, and I can’t wait to read the final two instalments.