If you search online for Autism and breastfeeding, you’ll see a ton of papers about the association – or lack of association – between mothers breastfeeding and the child “developing Autism”. The statement that “correlation does not equal causation” – ie: just because you can show a link between two things, there’s no evidence that thing A caused thing B – is very appropriate here. Let me start by pointing out that being Autistic is a lifelong neurotype we’re (both Aimee and Kat are Autistic) born with, not something that is, or could ever be, caused by a parenting behaviour. Anyway, my point is that, regardless of this association being of limited importance, this association is discussed in thousands and thousands of journal articles.
The thing that’s discussed far less often is the infant feeding experiences of Autistic adults who give birth to a baby (we’ll call them Autistic birthing parents from here on, to keep with community preferences for gender neutral language). There’s a clear public health message that’s well known in the UK (and beyond) that breastmilk is the optimal nutrition for babies. However, in the UK, whilst over 80% of birthing parents breastfeed initially this declines quickly as they face multiple and extremely challenging barriers to breastfeeding that they are not able to overcome as there is inadequate support. It is well established what health services should do to support the general population of mothers to breastfeed, but in practice there are often many hurdles that are not overcome when delivering services, which reduces their effectiveness. A lack of resources once birthing parents are discharged from hospital (a day or two after birth) is a common issue in the UK, in part due to a shortage of midwives.
If services are unable to meet the needs of a general population of birthing parents, those who are marginalised in some way are likely to need a more tailored service to meet their needs and allow them to meet their own breastfeeding goals, as research has found with mothers who have rheumatic diseases. That’s likely to be particularly relevant for Autistic birthing parents, due to our differences in interoception at least. That led Aimee and Kat to start looking for evidence on Autistic birthing parents’ views and experiences of breastfeeding. Working with Jennifer Leigh, Sara Jones and Amy Brown, we did a systematic review, which is a search for all of the research published on a topic, to find out what Autistic birthing parents thought about breastfeeding and formula feeding, which you can read in full here, and that we’ll discuss below.
Overall the views and experiences of over 300 Autistic birthing parents were included, but the literature only focused on the experiences of Autistic mothers, with no gender variance of birthing parents included. As we had anticipated, we found evidence that breastfeeding was difficult for Autistic birthing parents in ways additional to the general population. This was in relation to three main areas, which I’ll explore in more detail below: maternity and infant feeding support services were inaccessible; new parenthood disrupted existing Autistic coping strategies; and breastfeeding was difficult due to sensory and interoception issues.
First, there was very little evidence that maternity and infant feeding support services were able to meet the communication needs of Autistic birthing parents.
Second, like all parents, the transition to parenthood was exhausting. For Autistic birthing parents, however, needing to meet the baby’s needs – as it recommended by ‘on demand feeding’ – meant it was very challenging to maintain existing routines and to use coping strategies as they would have previously
Third, in the early weeks of breastfeeding, it is completely normal for babies to feed for many hours a day (this is known as ‘cluster feeding’), due to their tummies being very tiny. However, for Autistic birthing parents, feelings of being “touched out” (due to the intensity of this skin-to-skin contact) could be overwhelming. Alongside this, the feeling of the baby latching onto the nipple could feel painful and the experience of suckling or the milk let down reflex were uncomfortable for some Autistic birthing parents. Despite these additional challenges, many Autistic birthing parents were very determined to breastfeed and spent a lot of time researching how to breastfeed by themselves. When it came to formula feeding babies, some Autistic birthing parents were directed to give ‘top ups’ of infant formula, and some moved over to infant formula when it wasn’t possible for them to breastfeed any longer. In general, Autistic birthing parents were under supported by health professionals in problem solving when breastfeeding was difficult.
So, that leads us to the question of what should be done? We have the following recommendations for those who support Autistic birthing parents, although we think that these recommendations would also make services more accessible to other marginalised groups:
Communication should be clear, direct and specific and ideally followed up with written information.
Birthing parents should not be touched, for example when demonstrating breastfeeding attachment, without explicit consent.
Staff should receive training and tools related to Autism, but this also needs to be specific to infant feeding and able to be tailored to each Autistic mothers’ individual needs.
Autistic mothers should have a named provider of maternity and infant feeding support to avoid needing to repeat their needs to new members of staff.
Guidance on communication and sensory needs to be included in maternity notes (‘handheld notes’ in the UK) and child health records (‘the red book’ in the UK) for all mothers, would also lower the burden on Autistic mothers required to regularly reassert their needs.
Going forward, Aimee, Kat and colleagues are undertaking a review of Autism Health Passports, a tool which it is often argued can make health care accessible to us. We have also asked Autistic birthing parents to tell us about their experiences of maternity care and infant feeding in an online survey. The results of these findings will be published later this year, but you can contact Aimee if you would like to know more about any of these projects.
Our new research was funded by the Research Wales Innovation Fund and is published today in the journal Autism.
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?
Many people rely on their friends for emotional support and to be a listening ear. They seek comfort from those close to them and turn to them in time of need. This is not always easy for me. I have never really connected that well with people and always feel a bit of a burden if I share my challenges with others. Add to this several chronic health conditions and my ability to socialise is limited.
For this reason, my animals have always been my world. Throughout my life they have been my best friends and my comfort, there have been times when they have kept me going when I felt completely alone in the world and they keep me on track by having to take care of them.
My happiest times are when I am curled up on the sofa, wrapped in a blanket with a dog at my feet and a cat purring on my lap. The closeness of an animal lowers my anxieties and makes me feel less alone. That is when I feel safe and when I feel calm.
I didn’t understand until I received my autism diagnosis just why my animals had been so important to me, now it makes complete sense. I realised I could connect with them in a way that I could not connect with people, my animals loved me unconditionally and did not place excessive social demands on me. They knew when I was sad and needed to be loved, and we didn’t need verbal communication, we did not need words. On top of that an animal does not judge me if I haven’t brushed my hair or changed out of my pyjamas, an animal does not expect me to be anything other than I am.
Following my diagnosis in 2014 I launched the Autistic Women’s Empowerment Project. I had initially planned that it would only be an online project as I was socially isolated, dealing with a serious eye condition, struggling to leave my home and to take care of myself but I still felt the need to do something even if it were just to raise awareness. In June 2014 I was invited to attend The Autism Show in London alongside a company that was training service dogs to work with autistic children. The founder invited me along to promote The AWE project on her stand and instead of being excited I was filled with fear. I had no idea how I would interact with that many people and in such a loud and busy environment, but I was passionate about the recognition of autism in females and I really wanted to do it, so for three weeks I prepared myself. I wrote myself scripts for every possible scenario you could think of and worked out my own social story of what to expect. I watched virtual films of the venue and used google maps to explore the surrounding area to try and prepare myself. I had never visited London or a large exhibition centre before, so my anxieties were huge. Right until the last minute my brain was telling me to run away and presenting me 1000 reasons why I could not and should not even attempt it.
However, despite the overwhelming anxiety, I did manage to push myself beyond my limits which was an amazing achievement for me as I find social interaction difficult and crowded environments extremely overloading. The service dog that attended with us was amazing support. The support of a dog lessened my anxieties. I spent two days with her before the show so that she could learn my ways and her handler worked with me on strategies to lessen my anxiety and to help lessen the sensory overload that would be inescapable.
I didn’t think I would make it, but I did it I overcame my fear. We went over and over the plan and so we were prepared for what to expect. With the dog’s support I made it through the whole show and even managed to have a browse around the stalls. Whenever I had to go outside or walk-through busy environments she was there; she instinctively knew that I had a blind side and steered me away from people and objects. With the help of dark glasses and ear defenders and the interaction of my new canine friend I got through the weekend.
The first day I mostly spent on the floor with the dog interacting with the children especially those who were non-verbal as I have a good knowledge of Makaton. It was heart-warming and inspiring to see the children interact with her; she spent hours playing ball with what seemed like 100s of children. We were by far the busiest stand in the show and we got many repeated visits.
By the second day I felt comfortable enough to begin interacting with the parents as well as the children and I listened to their stories which is one of the biggest reasons I became a campaigner and advocate. I know I could not have done it without the support of that wonderful pup.
I have had dogs and cats all my life. Animals have always played a big part in our family; more than just pets they are members of the tribe. Both my son and my daughter are autistic, and their pets have been their best friends whilst they have been growing up. We have had many cats and dogs throughout the years. Many of whom have been rescue animals that no one else wanted.
When I was younger, I volunteered for the Cats Protection League and rehomed many old or unwell cats who were often overlooked when people were looking to home a rescue cat. My home often looked like a retirement home for cats. Many of the dogs my children had when youngsters were also older dogs who just needed a family. It was not just about the love the animal gave to us, it was the love our family gave to the animal and the skills having a pet taught my children. Now that my children have grown up and have their own lives and homes, my pets have become not just companions but also my emotional support.
I had always thought of myself of more of a cat person. I currently have four cats all with very different personalities and they too are wonderful company and emotional support. They help me have a routine no matter how much difficulty I am having with executive functioning they will remind me they need feeding, which then reminds me I need to eat. They keep me company when I’m working, me the computer a line of them sit intently watching; I usually having to push one of them off the laptop. The one limitation of a cat is they don’t like being on a lead and are not very keen on sightseeing. So, after my experiences at the Autism Show I knew I had to get me a dog.
I needed to find a way to overcome my anxieties and to calm my sensory system and for me the answer was my dog. I have always had dogs that complimented the personality and needs of my children. This time I chose my dog specifically for me. Boo the Welsh sheepdog came home when he was eight weeks old. He came from working stock from a Denbighshire farm, Mom and Dad were both working sheepdogs, but he was the runt of the litter and had been bullied a bit which led to him been of quite an anxious nature and we hit it off immediately. He picked me which made up my mind. He understood my anxiety and I understood his and our bond just grows stronger every year. He has loved having me at home all the time during lockdown, though he has missed the new toys that came when I returned from business trips.
Boo is far more than just a family pet. He has been with me six years now. He is very loyal and intuitive, and he has grown into an amazing companion. He learnt quickly that his barking was painful for me and will now only bark if there is something dangerous, such as a smell of smoke or if someone attempted to get into the house. He has learnt to recognise when I am anxious or sad and when I am in sensory overload and he interacts dependent on my mood. I need proprioceptive pressure when I am stressed to regulate my system, just the weight of the dog on my legs relieves the stress and the pain, and he knows intuitively when I need that.
He is not registered as a service dog, so there is a limit to the places I can take him but despite this he has encouraged me to explore many places that I wouldn’t have gone alone. Each day he learns another skill that helps me and him interact with the world. He encourages me to go out and get fresh air and his presence lowers my anxiety. I really feel a dog gives me a sense of safety and security but also a true sense of companionship that I don’t get from other people. I often find that having a dog encourages communication with others, even if it is just talking about our dogs and how lovely they are. I struggle with communication but it’s easier to make conversation over a shared interest and I never have a problem talking to my dog. He doesn’t care if I stammer or stumble over words. He is often my audience if I need to practice a talk or presentation and as he is getting older he is getting quiet vocal himself.
The best thing about my work with Autistic UK being done at home is not having to leave Boo. He really deserves the label of wonder dog. He is amazing emotional support. He rarely leaves my side. I know he sees himself as an assistance dog. I just never thought it would be an admin assistant. He has become really interested in my work and loves nothing more than joining in a Skype call or even Autistic UK team meetings and he is very good at giving me a hint at 1am that it really is time to go to bed. In fact, he is looking at me and trying to rush me along now.
Both Me and Boo have been a bit lazy since lockdown last March and haven’t been out much. We have spent lots of time in the garden, but I haven’t had much time for walks. Despite barely stepping outside my house since March of last year I have actually been busier than ever and Boo’s walks have been a bit neglected. Luckily Boo is also a bit of a television addict and a couch potato and he is more than happy to curl up on his chair with a doggy film on while I am working away, and we have thoroughly enjoyed watching the Disney channel together. But all this sitting around has had an impact on both our waistlines, and we do need to get some exercise and fresh air. So, we are going to use #Walk your Dog Month to get outside a bit more.
Here’s a few photos of my boy. We would love to hear your stories about your animal buddies.
Today marks the month and the week I must do something so important to me Do you wonder how much I feel in my body? Do I do what people think what I am doing I leave that with you to think about that.
I thought so long to saying this A new month will be the beginning of my journey The steps I take in and the words I hear I breath out I meant every word what I just said.
This week has finally come I must do something about that Something I really care about Do you know what that could be?
The strength I take in That thought came to me just in time I feel this is the right time for me to write this I do wonder myself if this is the right time for me to do this now.
I will not stand by this no more I will strive my best at work I will join in I will come to you and you come to me You brought this to my attention.
We will be together We will have each other We might have more friends we thought we did We will have the world and the people For month and week, we all care about it. This is important that we all take part in this.
I started writing a piece about how our online community looks after its members and where improvements are desperately needed, saying bullying should be called out at every opportunity. About half way through my third paragraph (bullies using the internet as a shield), when I found I needed to write about something I have never admitted in public before.
I have a bully.
Our community is blighted in a way rarely spoken of, particularly on social media. This Autistic community is made up (mostly) of vulnerable adults Yet too often, we see these personal attacks and hide to avoid being collateral damage. The bullies only see a self-satisfying, point scoring exercise in cancel culture and one-upmanship; whilst the silent majority remains that way out of fear. We all have enough problems IRL without some troll behind a keyboard doing their damnedest to destroy you, in order to satisfy their own twisted, selfish desires.
My bully thinks of themselves as a paragon of virtue, a person to be respected; a self-appointed Crusader who enjoys bullying through selective PMs suggesting inside knowledge, posing as a victim, posting slander, hints of wrongdoing without proof. Most advocates and activists find this this device to be anathema, but it is the mainstay of this bully’s armoury. I make no claim as a paragon of virtue. I’m Autistic. I’m as human as the rest of you, so I’ll not name my bully just yet, but you know who you are. Don’t you?
My bully came about when a group I was in tried to discipline them for bad behaviour. I wasn’t involved the second time, but it didn’t matter. With two others, I was targeted. The bully’s emails were accusations of damaging their reputation and engineering their expulsion over the informal warning they received from others. Complaints of how we had done this out of jealousy of their success. This became weeks of personal abuse, accusations and threats, usually many times in a day. They claimed innocence of all wrongdoing,, demanding full retractions of this and past ‘false’ complaints, demanding a public apology from us for suggesting they had behaved badly. The fact we could do nothing didn’t matter to them.
Think on that.
To prove their innocence, they relentlessly bullied 3 uninvolved persons for weeks, making baseless accusations and repeated, dire threats, to satisfy their Ego. Reminding them their accusations meant we could not deal with their complaint had no effect, those who gave the informal warning were ignored. Finally, we 3 made a bullying complaint and they resigned to avoid exposure. So started an online campaign of innuendo, hints of wrongdoing and insider information with no facts involved. Just constant, malicious gossip.
This continues to this day.
The effect on my health was stark. Some colleagues helped, some hid and pretended they ‘knew nothing about that’. I had MH problems, I became hyperalert and unable to avoid meltdown, suffered insomnia and inertia with 4 months off work this last year.
I’ve had enough of being a Troll’s victim. I thought “publish the emails, drag ‘em into the light”, so they can be exposed, removing their power. Then I thought, unannounced like that would be unkind. perhaps even bullying, so I keep to common decency. Something my bully lacks. Meanwhile, if anyone has ‘learned’ anything about me recently they want clarifying, just ask. I will answer honestly. My bully relies on my silence, which I now break.
Dear Bully, you are warned.
I’m fed up of being disparaged by this bully. I work bloody hard for our community and don’t get paid very much or often. This work, which mostly happens out of sight of social media, in the NHS and various Strategic Authorities, doesn’t make me special or important. I am only one of thousands who do this month after month across the UK. My work has finally got me to where I can do some lasting good; and the bully is back. For some reason, they need prove they’re ‘better’ than me; little more than Ego with a dash of narcissism. They can’t bear people they dislike having success, so they go about pulling those they perceive as competition down. A bully.
This stops now, as I will go public if they continue. I give fair warning. Got that, Bully?
I’m standing up to my bully and suggest others do, too. A bully’s power is nothing when they’re exposed. We all make mistakes. FFS we’re Auties, it’s in the job description! However, no-one deserves to be bullied for them. I prefer collaborative, constructive effort and the internal satisfaction good results brings. I don’t do this work for online celebrity and I certainly don’t do it for the money!
So; next time you are offered a PM or asked to join a private group to hear insider information or gossip about someone you may not know or have not met, that the PMer won’t discuss openly or include their victim in the conversation, think:
I am an Autistic advocate and a lived experience advisor, and this means that I am expected to put myself out for public scrutiny. There are those who think that as an advocate you have to share every aspect of your life there are also negative individuals in the world who will create their own version of your story to point score and turn people against you or just to create drama and scandal.
This week is anti-bullying week and at Autistic UK CIC we have a hash tag:
We are going to be sharing useful information on the different types of bullying, and we are also putting together a list of up to date resources to add to the Autistic UK CIC website. We will be delving deeply into this subject looking at everything from definitions to long term impacts.
Some of us feel strong enough to share our stories on our blog and this is my attempt to put my thoughts together in a clear way. This has been such a difficult post to write and it has led to a lot of flashbacks and tears. I have c-PTSD from years of bullying and trauma because of my differences, and I am not ashamed to say that I still have scars.
It’s not easy to talk or even write about bullying as an adult. It’s one of those unspoken subjects; a taboo.
As an advocate I have many people who share their stories of bullying with me and some of these cases have been extremely distressing. In five short years I have heard of multiple cases where bullying has been relentless, and it has had long term impacts on individuals’ wellbeing. Sadly, I know of several cases where bullies have pushed individuals into taking their own life.
People often perceive bullying as a childhood problem, but many of the experiences shared with me have been by adults who are experiencing bullying now. Just as Autistic children grow up into Autistic adults, those who were bullies during childhood carry their ways on through to adulthood and one bully can affect many people. They do a great deal of damage and adult bullies become very good at hiding their attacks, often presenting either as a perfectly charming individual or even portraying themselves as a victim themselves to gaslight their victim and observers.
Being out as an Autistic person makes me open and it makes me a target. I think this is something that we as advocates don’t talk about enough.
During my years as an advocate, I have become very mindful of the fact that there are different types of bullying and have seen it playing out in too many environments. It has become ingrained into our society and I am not immune.
I was bullied as a child, so I know the long-term impact this has on an individual. Since becoming an advocate I have had a couple of bullies who lurk in the shadows waiting for when I am at a low ebb to have another stab with their knifes ,usually in the back may I add.
One thing I am always very mindful of is that there are two sides to every story and those who are so quick to throw stones often live in glasses houses. I am the type of person who collects all the stones that people have thrown at me to build a protective wall because I have learnt all about bullying. I use that knowledge to protect myself now, but it shouldn’t have to be like this.
Grown up bullies use covert methods as bullying often becomes more strategic in adult bullies (think of corporate bullying and competitor bashing). Often there is an ulterior motive especially in employment settings, business, and not forgetting the world of social media which is a subject all of its own.
I am seeing so many of my friends and colleagues having to deal with bullies and witch hunts across social media that I have absolutely no motivation to reach out to anyone on these platforms other than those I trust. I haven’t been attacked directly yet, but some close to me have and I know it will only be a matter of time. I won’t even go onto Twitter because in my opinion it has become the modern-day version of the stocks. One thing I have noticed is those who criticise tend to do it late at night when the person receiving the criticism is either asleep or, when awake, in a less resilient frame of mind so are less likely to challenge the perpetrator.
For a long time, I let other people’s negativity, bitterness and narrow-minded perceptions stop me from sharing my views and using my voice. I would let the things people said really get to me and would spend days worrying about how people perceived me.
I have removed a lot of people recently from social media as I have constantly had people trying to draw me into their arguments and group attacks. That really does not work with my mindset. People who know me will understand why I need to protect my own health and well-being and will actually make the time to engage in discussion rather than just lurking around for when they want to throw in negative jibs. I have a really strong scaffold of people around me but over the last few months I have definitely pulled away from more and more platforms which are become toxic an inhabited by trolls.
Our whole lives do not need to be shared on social media for us to be active citizens and advocates. There is a big difference between giving up your time to bring about systemic change and spending your whole life attacking and criticising on social media, just because another person’s experiences don’t fit into your narrow experience.
I find it especially distressing during this time that people feel they have a right to criticise and condemn without even checking their facts first. So many people are dealing with challenges created by COVID-19. We don’t know what anyone is having to deal with behind closed doors, and all this nastiness and underhand bullying is just adding to the stress levels.
It’s really not clever eating your own, especially when you only have half facts and hearsay to base your defamation campaigns on. The pandemic has already divided communities and that is the last thing we need. We can’t allow our social structures and support systems to break down because it lessens our voice.
Those who are buying into this mindset of ganging up on others are not helping anyone. While people are fighting amongst themselves, they are not focusing on the good of society or the future issues that we are going to have to deal with. I refuse to interact anymore with people who are purely focusing on their own personal vendettas.
We all have a choice of paths we take in life and I choose the one that leads to compassion and empathy, not criticism and condemnation.
Due to the COVID-19 pandemic, rather than organising collective events across the UK National Play Day 2020 is focusing on children’s rights to play at home. We’re increasingly being told about the importance of play, and there’s copious research into why this is, however when you’re Autistic and/or the parent of an Autistic child, most sentences which include the word “play” in relation to your child are telling you about how they’re “not playing correctly,” or they’re “only doing parallel play rather than cooperative play,” all heading to the climactic “we need to teach your child how to play.”
Numerous dictionary definitions state that when people play they’re spending time doing enjoyable things; doing things for pleasure; doing things for fun. So how on earth can anyone be doing it wrong?
National Play Day state that:
Playing is fun and is central to children’s happiness
Playing helps children’s physical, mental and emotional health and well-being
Playing boosts children’s resilience, enabling them to cope with stress, anxiety and challenges
Playing supports children to develop confidence, creativity and problem-solving skills
Playing contributes to children’s learning and development.
Nowhere does it state that playing is prescriptive and must follow a set pattern. Neither does it state that “proper play” means pretending to drive a toy car down an imaginary road rather than lining it up, while also meaning that a banana is also a phone and not always just food.
I’d planned to write an article about the differences between non-Autistic and Autistic play, citing research as well as my own experiences as an Autistic parent of Neurodivergent children, however when I started to do search for things to back up (or disprove – I’m not shy about being told I was wrong) what my (and others I know) experiences are, all I could find were research documents pertaining to non-Autistic children, and hundreds of articles about how to “make” your Autistic child play like everyone else. At this point the plan went out of the window – I could say I threw my toys out of the pram, but that wouldn’t be very appropriate of me, would it?
Instead I want to use this as a springboard to start a discussion:
How did you play as an Autistic child?
How do you play as an Autistic adult?
What are your Autistic child’s favourite games?
Before going further, I just need to say it loudly for the people at the back:
Forcing Autistic children to “play appropriately” is a contradiction of play. You are making them work.
Play is important for so many reasons. It helps children practice skills they’ll need later in life, and current pedagogy uses play with younger children as the main basis of teaching: Learning Through Play seems to be the tagline of most Foundation Phase (KS1) departments. Play is so important that it’s article 31 in the UN Convention of the Rights of the Child which is enshrined in law in Wales.
Among the research, common themes of play being important for recreation and relaxation dominate the results, so why when we have Autistic children – who are often autonomy seekers in a world where they have to work hard to conform – do we turn their play into another therapy/learning opportunity/social skills lesson? Why can’t they play the way they want? Why must we steal what little autonomy and self-regulation they have?
Play is also described as a cathartic activity in which people (particularly children) express their feelings, get rid of negative emotions, and replace them with positive ones. Do you think that by telling a child that they can’t solo-spin on the playground because they should be playing tag with the rest of the class is cathartic for them? Are they going to be able to express their feelings? Or are they having to ignore their needs for the sake of your tick box exercise?
Instead of changing the Autistic’s method of playing, join them! Spin, jump, flap, line up toys, play a couple of hours of Minecraft, whatever it is that they want to do. The main focus should be on having fun.
Today is the International Day of Friendship, and to mark to occasion I wanted to write about some of the myths surrounding friendship and Autistic people.
If media and outdated medical opinions are to be believed, Autistic people can’t make friends. We’re aloof, bluntly honest to the point of being rude, don’t like the company of others, and only tolerate people if their presence is of benefit to us. Except the media and medical opinions are complete nonsense, and actively damage our community.
One of the most common reasons parents are given by medics who refuse to give their child an autism diagnosis is, “he/she is too sociable,” or, “but they have friends.” Our social communication differences have somehow become equated with an inability or desire for companionship, and despite Autistic adults protesting this theory, it seems to have stuck. A plethora of adults have been refused diagnosis because they’re able to have romantic relationships and are, heaven forbid, even married!
This assumption has caused deeper wounds for those who are more able to mask their differences or become social chameleons, regardless of the damage it does to their wellbeing. As this typically affects females in higher proportions to males (both trans and cis women and girls), understandably a lot of work has been dedicated by advocates and some professionals into establishing a set of ‘female’ Autistic characteristics due to their under-diagnosis. However, this has meant that those who present as male in clinic have missed diagnosis when it’s possible they would have received one if measured against ‘female’ characteristics.
Those Autistics who do get diagnosed while young – possibly because they are happier alone, or because they have had difficulties making and keeping friends in school – are often placed into therapies or social skills classes which have a primary aim of making the Autistic person change the way they interact with people to meet the needs of non-Autistic people. They’re told, “this is the only way to make friends,” and that their methods of interacting, communicating, and (in many cases) playing are wrong. Being made to follow programmes designed by non-Autistics to get Autistics to ‘fit in’ mean that these Autistics either join the huge numbers of us who mask, or continue to feel isolated while also developing self-esteem and mental health difficulties. Wouldn’t you if you were told the reason you don’t have friends is because who you are is inherently wrong? Remove the focus from social skills classes to helping Autistics find their community – friendships will then naturally bloom and flourish.
Why do the non-Autistics get to be who they are? Why is it okay for other children to be lifted up, told to be proud of being different, and that they can be who they want to be, when the Autistics get the addendum: but not like that? Is it any wonder that by the time we reach adulthood, regardless of when we were diagnosed, most of us have at least one co-occurring mental health condition?
However, it’s not all doom and gloom, for the arrival of social media (and the internet in general) has changed the face of friendship for so many of us. I don’t dispute that there are toxic elements to social media, but for Autistic people – especially those diagnosed late – it’s where we finally find our tribe. There are a huge number of Autistic social groups online. From hashtags on Twitter (#AllAutistics #ActuallyAutistic and #ADHDAutism to begin with) to Facebook groups (Neurodiversity UK, Autism Inclusivity, Autism Late Diagnosis Support and Education are all good starting places), these are places which – often for the first time – Autistic people feel supported and find people they can relate to. For so many of us most of our friends are online, so please don’t assume that we’re being antisocial for looking at our phones.
During the COVID-19 pandemic, many Autistic people have said that they have been able to socialise and keep up with friends more than they did pre-pandemic. Not having to go into the office and/or commute means there’s more mental energy for time with friends, and its online nature (including online quizzes, virtual pubs, and gaming) means that participation is far easier, so they feel more connected. I know I’ve socialised more with some of my non-Autistic ‘mum friends’ far more regularly than I would if it was in person.
When we branch out of the digital realm and meet fellow Autistics in person, we rarely have the same level of awkwardness, anxiety, and misunderstanding as we do when we try to socialise with non-Autistics. This is seemingly at odds with the assumptions non-Autistics have of us which were discussed at the start of this article, and is why Autistics believe that it’s not completely accurate to state that we have social communication difficulties, rather social communication differences. We can often communicate extremely well with others who share our neurotype, regardless of whether or not we speak. We may not always understand what non-Autistic people are trying to communicate, but actually they also don’t understand us. Communication is a two-way street, and of course we’re going to be exhausted by trying to maintain friendships with non-Autistics who expect us to walk a ‘one-way road’ to communicative harmony: at least meet us half-way!
Don’t assume that Autistic people have no desire to make friends. Educate people when they claim that Autistic people cannot make friends. Understand that online friendship and companionship is valid, and can be just as fulfilling (if not more so) than in-person relationships, particularly for Autistics. On this International Day of Friendship, if you are friends with a neurodivergent person, ask yourself: are you making them do all of the work? Are you expecting them to change their communication style without thinking about adapting your own? Do you make assumptions about their abilities, needs and desires based on their neurotype? If so, please consider whether or not you could help your friend further and make life easier for them. And please, at the very least, meet them half-way.
Letters to an NT friend on the outside from a lifer on the rarely secure A Wing of Life. Sometimes satirical, sometime internal musings of an older autie, looking through the prism of lived experience. It isn’t intended as any negative criticism, comment or opinion of any particular person or organisation. Just wry humour. Except A$. They’re fair game.
It does however pay humble homage to the late, great Ronnie Barker and Richard Beckinsale. Thank you for the laughter and the wisdom.
This occasional series is written for entertainment and should NOT be seen as any kind of guiding philosophy, ideology or personal or political comment. Unless you’ve got Jelly Babies. So long as you’re sharing, you can believe what you like…
Missal the First
June (I think) 2020
How you doing fella? Sorry about no letter for a while, but the usual restrictions on A Wing got even more fun during the lock-down you lot had to get your eyes tested, or whatever. Nasty, this covid.
Didn’t notice much difference first 2 weeks or so (you know me, don’t get out much), but it was bloody difficult to get bog roll. Some of the trustees lucky enough to work in the kitchen were moaning that they had to make even more chips as some git had swiped all the pasta. Doc says they won’t need the bog roll if they stuff all that pasta. Nasty…
Doc Magister (still can’t work out if that’s his name, his attitude or he’s a secret Whoverian) said we’d all be OK, cos we were all to keep in and those in the Infirmary were an ‘isolated system’. First thought was ‘No shit Sherlock, finally noticed!’. Then I got he meant cooped up 24/7 (cos we might or might not be vulnerable) and the doors to the Infirmary staying shut. People going in, but no one out, except managers, staff, cleaners, Doc, health visitors, the bloke who cuts the lawn, the kitchen staff, agency workers and NHS and council officials making sure no one is breaking the isolated system and that bloke from the funeral home. Doc says they’ve been perfectly safe and isolated. He’s in charge of these things, so back to one hour a day round the yard for exercise. I miss the gym.
Your lad Ricky is fine. He says he’s got a discord server (sounds like the bar staff at a dodgy nightclub) and you still need to download the app. The Wi-Fi in here’s been a bit shitty unreliable since everyone and his cat went Zoom! Reminds me, Fat Larry says Hi. He would Fb you, but he’s banned. He thought 5G had something to do with all this, so he set fire to his partner’s brand-new mobile in the computer room.
Like I said, Ricky’s OK. All that ‘I’ve been practicing this for all my life’ when it started, but he seems to be moodier now like the rest of us, but making the best of it. He’s learning Russian. Some 12 yr old on this WoT thingy, Mocba3ear1941, keeps writing Cyrillic in the chat and Ricky thinks he’s taking the piss. Honestly, I think that we’re all feeling it. Especially those of us on the single landing. Didn’t realise how much I relied on some people until they were out of reach. Still, should be used to it, you’d think, seeing as quite a few people put themselves out of my reach after I got sentenced.
Since they closed the infirmary, we’ve all had an app to ‘see’ the Doc. Not that the booking staff are too helpful at the best of times, but now seems just all attitude like ‘you’re wasting my time’ coming back at you. Brrrr! I love person centered care. Self centered’s more like it for the Last 10 weeks.
Let me know if you get this, Ricky has set me up a what’s App group with you, me, Jason and Michael. He says you can use that in your sleep.
Stay Safe mate
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