Are Autistics empowered during pregnancy and labour in line with the ICPD?

Today (11th July 2020) is World Population Day which “this year calls for global attention to the unfinished business of the 1994 International Conference on Population and Development” (ICPD).[1]

The ICPD met in Cairo in 1994 and 179 governments adopted a Programme of Action relating to reproductive health and the empowerment of women. ICPD is “often used as a shorthand to refer to the global consensus that reproductive health and rights are human rights.”[2]

[Before I continue, I’d like to thank Hayley Morgan for her guidance and direction to some of the only academic articles out there regarding this matter.]

Despite this consensus, many Autistic women (and those non-binary and otherwise gendered people who have given birth), report that the support (or lack of) they received during pregnancy and birth from their medical teams was not reflective of their needs. A study of women with intellectual and developmental disabilities conducted in 2015 by Potvin, Brown and Cobigo found that a “high level of available support was not always perceived as beneficial” and that “social support is perceived as most effective when three conditions are met: (1) support is accessible, (2) support is provided by individuals expressing positive attitudes towards the pregnancy, and (3) autonomy is valued.”[3] The study concludes that there’s a lack of accessible information for developmentally disabled women, and that maternity care providers should “be aware of stigmatizing attitudes and respect the autonomy of pregnant women with IDD as they prepare for motherhood.”

For pregnant Autistics, not only is there a lack of accessible information for those who need it, there’s a lack of information full stop. If you Google ‘pregnant and Autistic’ or ‘Autistic pregnancy’ the results include a plethora of articles speculating about whether or not you can ‘prevent autism’, articles listing the ‘risk factors for having an Autistic child’, a small handful of academic research papers which are often behind paywalls, and (from the first 10 pages of the Google search results) a couple of articles containing the experiences of actually Autistic people who have experienced pregnancy and birth.

Pregnant people often spend at least some time researching what to expect during pregnancy and birth – there’s an abundance of books, articles, websites and forums highlighting this fact – yet pregnant Autistics and Autistic parents have been accused of Fabricated or Induced Illness due to the volume of research they have conducted and their use of medical – rather than colloquial – terminology in appointments. This is discussed in a 2017 article by The Guardian in which Autistic women report their experiences of motherhood including fears of putting “professionals’ backs up and [being] accused of causing or fabricating their children’s condition” and being “terrified their children will be removed from them if social workers misinterpret their autistic traits as indicating potential harm to the child.”[4]

It’s also reported that the experiences of pregnancy and birth for Autistics are quite different from their non-Autistic counterparts, and that sensory differences (for example) were dismissed as ‘not possible’ by their midwifery team. An article on Tommy’s (the miscarriage and baby loss charity) website features Rachel, an Autistic mum who has experienced multiple miscarriages. Rachel talks about how she (along with “many Autistic mothers”) are “very aware of their internal body state and knew things about their pregnancy before the textbooks said they should” which meant that she was more acutely aware of pregnancies she had lost in the early stages of conception. Rachel also discusses the difficulties Autistics have with processing pregnancy loss, and that “some may not process what has happened immediately or even within the weeks and months that follow the loss.” This processing delay coupled with reduced social networks reported by Autistics (corroborated by Potvin, Brown and Cobigo’s aforementioned study) contribute to the “isolation and detriment [pregnancy and baby loss] causes to mental health.”[5]

A study published in Women and Birth in 2017 explores the sensory differences reported by pregnant Autistics alongside other reported challenges they face. The review of current literature and its supplementary anecdotal evidence from blogs found that Autistic women “reported that they needed to feel more empowered about the circumstances of their giving birth and that they relied on three factors during their experience—clear communication, sensory adjustments and change management.” It highlights issues faced by Autistic people more generally – hospitals being noisy environments and touch which “may bewelcomed by many patients can be the cause of pain or distress for the [Autistic person].”[6]

Therefore, Autistic UK recommend that the needs of Autistic women, non-binary, and otherwise gendered people who give birth are reviewed and recognised in accordance with ICPD. Midwifery teams need to receive clear guidance and training from Autistics with lived experience in order to ensure the needs of all pregnant Autistics are recognised and met. There are a number of Autistic professionals with experience in this area, including Hayley Morgan MSc, who are able to provide talks and training regarding the Autistic experience of pregnancy and birth in order to achieve positive outcomes for both the Autistic person and their baby.

References

[1] United Nations (2020), ‘World Population Day July 11’ (Online) accessed 9th July 2020. Available at https://www.un.org/en/events/populationday/

[2] United Nations Population Fund (2019), ‘Explainer: What is the ICPD and why does it matter?’ (Online) accessed 9th July 2020. Available at https://www.un.org/en/events/populationday/

[3] Potvin, LA, Brown, HK & Cobigo, V (2016), ‘Social Support Received by Women With Intellectual and Developmental Disabilities During Pregnancy and Childbirth: An Exploratory Qualitative Study’ Midwifery, Vol. 37, pp 57-64 (Online) accessed 9th July 2020. Available at https://pubmed.ncbi.nlm.nih.gov/27217238/

[4] Hill, A (2017) ‘Mothers with autism: ‘I mothered my children in a very different way’’ The Guardian (Online) accessed 9th July 2020. Available at https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic-mothers-undiagnosed-children

[5] Rachel (ND) ‘Recurrent miscarriage and being autistic’ Tommy’s (Online) accessed 9th July 2020. Available at https://www.tommys.org/our-organisation/help-and-support/baby-loss-stories/recurrent-miscarriage-and-being-autistic

[6] Rogers, C, Lepherd, L, Ganguly, R, & Jacob-Rogers, S (2017), ‘Perinatal issues for women with high functioning autism spectrum disorder’ Women and Birth Vol. 30 Iss. 2, pp e89-e95 (Online) accessed 9th July 2020. Available at https://www.sciencedirect.com/science/article/pii/S1871519216301287

Breaking News – Pupils in wales to return to full time education in September

Kirsty Williams – Education Minister – has just announced that all schools will open on 1st September for all pupils, with schools having the option to initially prioritise entry for key year groups (Reception, years 7, 11, 12 as examples) for the first few days.

This announcement is subject to the continuing steady decline of positive COVID-19 cases. Kirsty stated:

  • There will be limited social distancing
  • Children will typically in contact groups of 30
  • Social distancing guidance for adults should follow the general guidance at the time
  • If there’s a local COVID-19 outbreak schools will conduct risk assessments with the LEAs
  • If staff/pupils test positive the TTP system steps in
  • Schools to have a stock of home testing kits for this eventuality
  • Schools will have back up plans in case pupils need to return to remote learning
  • Guidance for schools will be published Monday next week
  • Logistical challenges will be addressed in the guidance
  • Unions have been consulted and have an opportunity to feed into the guidance before it’s published on Monday
  • Welsh Government are working with childcare groups to enable them to increase their contact group numbers
  • Welsh Government will provide £29million funding to recruit the equivalent of 600 new teachers and 300 TAs
  • This funding will be fairly distributed across Wales into school budgets
  • An additional £5million will be provided to double resources relating to pupil mental health and wellbeing
  • Welsh Government currently have a Whole School Framework Consultation regarding wellbeing
  • Targeted support will be provided for disadvantaged and vulnerable young people, and pupils in years 11, 12, and 13
  • This targeted support is to assist with reducing attainment gaps
  • Minister states that parents should be confident in sending their children back as WG are following scientific advice
  • TAG understanding of COVID-19 is that younger children don’t seem to be vectors for the disease
  • International studies show that under 18s make up less than 2% of COVID-19 cases
  • Minister advises it would be disingenuous to claim there is zero risk – it’s about mitigating risk
  • Parents will initially not be fined if they choose not to send their children back – this could change in the future
  • If a household has a high risk family member a family centred approach will be taken
  • Guidance regarding vulnerability has been published by WG

Autistic UK will read the guidance once published to ensure the needs of pupils with Additional Learning Needs and Disabilities have been considered. Information regarding our ongoing work in this area can be found here.

Interview with Chris Bonnello: Author of The Underdogs Series and OWner of Autistic Not Weird

Chris Bonnello holding up copies of the first two Underdogs books

Kat Williams chats to Chris Bonnello, owner of Autistic Not Weird and author of Underdogs about the series and releasing a novel during lockdown. A video of the full conversation can be found at the end of this post, or you can click here to go directly to the video.

 

Kat Williams (A-UK): So, thank you Chris for joining us today. I and the rest of Autistic UK love your work through Autistic Not Weird. I’m also personally a Patreon supporter and I’ve backed both Underdogs and Underdogs: Tooth and Nail.

Chris Bonnello: Thank you.

Kat Williams (A-UK): I was gripped by Underdogs; I read it in a day. Unfortunately, I haven’t had a chance to read Tooth and Nail yet because it’s not been that long since it’s arrived, but it’s next on my reading list and I’m pretty sure it’ll probably be a read in a day job again.

Chris Bonnello: Awesome

Kat Williams (A-UK): It’s exciting. You don’t want to stop because you want to know what’s happening next.

Though many of our followers know who you are there may be a couple who don’t, so could you please tell us a little bit about your background and how you became an Autistic advocate?

Chris Bonnello: I’m Chris Bonnello. I’m a special needs tutor, used to be a primary school teacher, and [I’m an] autism advocate/speaker, writer, novelist and so on. Did I mention I’m Autistic myself? You probably gathered already. [I was] diagnosed with Asperger’s Syndrome in 2011 (January 12th) and in 2015 – having just left mainstream primary school teaching – I decided that there was an awful lot of good that I was not doing by keeping my autism/Asperger’s a secret, so I launched Autistic Not Weird where I could talk about autism from both a personal perspective and a professional perspective and it seems to have taken off a bit.

Kat Williams (A-UK): A little bit! Yes.

Chris Bonnello: I now get to call myself an award winning writer and international speaker and that was not the plan.

Kat Williams (A-UK): It’s a very good place to end up though.

Chris Bonnello: Yeah

Kat Williams (A-UK): It’s not surprising you’ve won awards because your articles are incredibly balanced. You are very empathetic and also sympathetic but also factual. It’s really important to have that balance because we can get caught up in emotions sometimes and maybe skip on the facts and other people are so factual they forget that they’re dealing with people. It’s difficult to get that balance and you do have it.

Chris Bonnello: Oh, thank you.

Kat Williams (A-UK): I believe your first degree was in maths and you teach maths, so what led you to doing a master’s in creative writing?

Chris Bonnello: My first degree was mathematics with education at Newcastle (awesome city) and the plan was always to become a primary school teacher, but I wanted to get a maths degree just in case; it was better than spending four years getting a teaching degree, walking into a classroom and then thinking ‘wait I don’t actually like this.’ So, I got a maths degree, then I got a teaching degree and then I think the decision to start the creative writing master’s was about a month or so before I started Autistic Not Weird. Having just left teaching I was thinking ‘well what am I going to do with my life now? I mean, I’m never going to be a teacher again,’ – as I thought at the time because back then I didn’t realise the huge gulf there is between mainstream teaching and special needs tuition, and how much one of them suited my personality and what I really want to get out of being in education compared to the other.

I’ve been wanting to become a writer or publish a novel ever since I was about thirteen and writing Sonic the Hedgehog fanfiction and I figured, ‘you know what? I’m in my late twenties now, I know that I can write good stuff I just want to take it further and see if a master’s in creative writing takes me anywhere.’ My dissertation piece was a piece called Guerrillas which was this rather ridiculous story I wrote in 2010 as a coping mechanism for being unemployed about a bunch of people hiding in the countryside fighting a massive army of cloned soldiers. I was trying to write a story about the most unwinnable – mathematically unwinnable – war possible and this ridiculous story became my dissertation for my uni degree. A year later a publisher said, ‘actually yes, I like the sound of this.’ A year after that it was published. A few weeks ago, the sequel came out.

Kat Williams (A-UK): It’s no wonder that it was picked up by a publisher because it is absolutely fantastic. There is a bit of a story I remember behind the change in name to Underdog do you want to talk through why that was changed?

Chris Bonnello: It was called Guerrillas because that was the name I came up with in 2010 and back then I believed I’d be the only person who’d ever read it or take it seriously, so I didn’t really need an impressive title. When we started the publication process the publisher said, ‘we’re not quite sure whether Guerrillas is the best title for it.’ They were basically saying what I had been thinking for the last six months to that point, but kind of procrastinating the conversation about because first off, Underdogs is a better title because the characters are Underdogs in just about every sense. In the war sense twelve – well it starts off as twelve and becomes thirteen – thirteen characters hidden in the countryside, untrained in any kind of military stuff, against millions of cloned soldiers: they’re Underdogs in that sense. Eight of them [are] also teenagers who escaped the attack on their special school, so they’re kind of Underdogs in the sense that society pathologically underestimates what they can do. They’re seen as the people who are supposed to not be able to do this that and the other, so it was just a much more suitable title.

One comment that completely solidified the fact that the title needed changing was an Argentinian follower who said, ‘if you call it Guerrillas your story won’t be particularly popular in South America because my country is still recovering from the guerrilla warfare we suffered in the 1970s.’

I thought oh yeah! When people who aren’t me think of guerrilla warfare they think of the Vietcong. People don’t have the sort of positive representation that I want the Underdogs to have.

Kat Williams (A-UK): Underdogs is a more descriptive title for what’s going to be read as well, so I think that it’s definitely a good choice.

Chris Bonnello: You also don’t have to explain to people that you’re not talking about the animals.

Kat Williams (A-UK): Exactly, and that’s also a bonus.

Some people who aren’t familiar with you and the Underdogs series may hear about it and assume it’s going to be mainly introspective narration and autism clichés in the style of books like Curious Incident of the Dog in the Night-Time. How would you describe Underdogs to them? Can you tell us a bit more about the series? But obviously keeping it spoiler free.

Chris Bonnello: The Underdogs series is a dystopian near-future war series where the whole of Britain has been imprisoned in giant walled citadels. They’re under the watchful eye of hundreds of thousands, if not millions, of cloned soldiers and the only people left in the abandoned British countryside trying to fight for these people’s freedom are thirteen people called the Underdogs. And like I said, eight out of these people are teenagers who escaped the attack on Oakenfold Special School, so you’ve got Autistic heroes, dyslexic heroes, heroes with ADHD, anxiety, Down’s Syndrome. You mentioned autism clichés – as an Autistic person myself I’ve always been very mindful about how autism and neurodiversity in general need to be represented in the media because around the time that Underdogs came out, perhaps a few years before, it became the very “in thing” to have a token Autistic character. We had everything from an Autistic Muppet to an Autistic Power Ranger and in some of these cases their autism wasn’t really explored or developed or anything. It’s one thing to have Autistic characters but you’ve got to have meaningful Autistic characters. In fact, the best answer I can give really is comes from the notes from the author at the front of the first book. I’ll read it out:

“The most important fact about autism, dyslexia, or neurodiversity in general, is that each person’s experience is different. No two autistic people (for example) are the same: we are different from each other for the same way that non-Autistic people are.

In recent years we have seen much wider representation of disability and neurodiversity in works of fiction. Much of the time these works are criticised for not representing the entire community, and of course they don’t. It’s impossible to represent a whole population when it consists of individuals.

Therefore, I encourage you to see the Underdogs as characters in their own right, rather than poster children for their conditions, disabilities or differences. Ewan does not represent every teenager with a PDA profile; he represents Ewan. Kate does not represent every Autistic girl with severe anxiety; she represents Kate. Charlie does not represent every boy with ADHD; he represents Charlie.

Humans are individuals in all corners of humanity. The Underdogs are no exception”

Kat Williams (A-UK): Absolutely, and I think that it’s important that people remember that because it is so easy for people to fall into the cliché that is supposed to be allegedly representative of everybody and it’s good that your characters aren’t that. They are full characters; they are multidimensional and that is what a character should be. It’s really refreshing to read that.

What made you write a series of dystopian novels with a full cast of neurodivergent protagonists?

Chris Bonnello: I wouldn’t say a full cast. There are a couple of token neurotypicals in there.

Kat Williams (A-UK): Well, you do have to give them a little bit of space, don’t you?

A lot of the books that you read with neurodivergent characters tend to be self-discovery books or, if they’re written by neurotypical people, they tend to be about a parent who’s having an awful life because of their disabled child and how they’re overcoming adversity. But [Underdogs isn’t] this.

Chris Bonnello: And often the overcoming adversity is basically the disabled character becoming less disabled.

Kat Williams (A-UK): Yes! Which is incredibly frustrating for anybody reading it who happens to be disabled or Autistic or whatever relation they have to the character they’re reading.

So, what made you write those characters in that setting?

Chris Bonnello: A bit of a confession to start off with: the very first draft did not contain any neurodiverse people. Well, okay it did, Jack was blatantly Autistic all the way from the very first draft, but it was a very generic bunch of people in the 2010 draft. After that I started working in a special school and a lot of the teenagers there were strikingly similar to me when I was a teenager, except some had academic learning difficulties. Others didn’t really have learning difficulties they were “just” bullied out of mainstream. The more time I spent in that school (and me being a very active writer at the time as well) the more I came to realise that there’s a huge population here that isn’t represented meaningfully in fiction – or at least is rarely represented. I looked around, saw Guerrillas and I thought: I’ve got an idea!

With a huge, almost ensemble, cast like Guerrillas/Underdogs had I [could] re-write it and make just about all of the characters escapees from an attack on their special school, neurodiverse with a wide range of different neurotypes, and it just worked! And honestly, it is so much better. I call that the moment when the story actually started to become good.

I often say that a character is much more important than plot because you could write the most exciting plotline ever, but if the characters are as dull as ditch water then the readers are not going to care. And it’s almost the other way around. You can write a really dull predictable plot, but if the characters are interesting then the readers will love it.

Kat Williams (A-UK): People want to read characters they can relate to. Even if you’re reading the most fantastical novel set in a world that would never be real you are still reading character that you can see yourself in. When you’re neurodivergent you very often can’t find characters that you relate to, especially when you’re a teenager growing up, figuring out that you are different to a lot of the people around you. I remember when I was a teen I would escape into books because the real world wasn’t the nicest place for me, so books were safer, and I could also predict what was happening in books a lot better than I could predict what was happening in the real world, but it was very rare that I fully related to a character. I’m really glad that people such as yourself are now writing books that teenage me could relate to.

Chris Bonnello: There’s another book I’ve read recently just released this year. It’s called The Infinite by Patience Agbabi. She’s generally a poet by trade, this is her first novel and that was really refreshing as well. It’s a time travelling adventure in a world where people born on 29th February have this ability to leap through time

Kat Williams (A-UK): That’s so cool!

Chris Bonnello: The main character is not only a leaper born on February 29th but also Autistic. And not only Autistic but far from being the stereotypical white, male, middle class, Autistic maths genius – and I say this as a stereotypical white, middle class, maths genius Autistic guy – the main character in The Infinite (which is about to become a series as well) is a twelve year old black Autistic girl of Nigerian descent, who lives with grandma round the back of an industrial estate, who travels through time and solves crimes.

Kat Williams (A-UK): That sounds incredible!

Chris Bonnello: It is quite awesome

Kat Williams (A-UK): I am definitely going to buy that once we’ve finished this chat because that sounds brilliant! And thank you for bringing it to mine, and everyone else’s, attention.

Chris Bonnello: No problem

Kat Williams (A-UK): Becoming topical right now: How has the Coronavirus pandemic affected the sales of Tooth and Nail because it’s been released in the middle of this pandemic?

Chris Bonnello: I could keep a stiff upper lip and say it could have been worse, although a huge amount of the books I sell are at conferences which just aren’t happening anymore – I’m hoping we’ll get some in the autumn. I managed to keep my head above the water in terms of self-esteem by saying, ‘it’s not like you’re selling bananas that you’ve got to sell by a certain date. You’ve not *not* sold these books you’re just delaying the selling of these books.’ It’s a bit more problematic though when you ask the publisher, ‘are we still on course for Underdogs 3?’ And the reply comes, ‘in principle yes we would love to publish it. Ultimately though, the commissioning team will make a decision based on book sales over the next three months.’ I’m thinking, hmm.

Kat Williams (A-UK): What can we as supporters do to help make books three and four a reality? We’re halfway through a series! We can’t allow the next couple of books to not happen; we need to know how this ends. So, what can we do to help?

Chris Bonnello: Other than the really obvious answer of buy the books, which is such a predictable answer, writing reviews on Amazon or Goodreads to encourage other people to do the same, and sharing the news – building up some hype about the series.

Call up your library, ask them, ‘do you have the Underdogs series by Chris Bonnello?’ And, ‘why not?’

One thing I would love to happen is kicking up some kind of fuss – I have my own personal name for it the Fifty Shades of Grey effect. Remember a few years ago where everyone was reading Fifty Shades of Grey? You ask all of these people, ‘why are you reading that book?’ Just about none of them would have said, ‘I’m just kind of into slightly adjusted erotic Twilight fanfiction.’ And no one’s going to say, ‘oh, BDSM in literature is just my thing.’ Almost everyone reading Fifty Shades of Grey told me that they’re reading it just to see what the fuss is about. I would love to have that kind of hype around Underdogs. If everyone in the world buys Underdogs ‘just to see what the fuss is about,’ that would be amazing! So, kick up some hype about it.

Kat Williams (A-UK): Yep, absolutely. You mentioned libraries which is a good point, but also schools are always looking for the next book to add to their library. I know their budgets have been cut somewhat but a lot of the books they have are incredibly dated so maybe even gifting a book to your local school so the teachers can have a read and they get hooked and then they want the pupils to read it.

Chris Bonnello: There were whispers a little while ago about whether or not Underdogs could get on the New Zealand English curriculum. I’ve not heard anything about it since but there were at least whispers about it.

Kat Williams (A-UK): In Wales we’re getting a new curriculum and teachers have [allegedly] got more scope for setting their own set texts and things like that, so it’s probably worth speaking to a few Welsh English teachers.

Chris Bonnello: Awesome

Kat Williams (A-UK): I think it would be a great book for kids to study. Particularly in mainstream schools actually because I think that if they see neurodivergent children as the heroes they will treat the neurodivergent pupils in the class better.

Chris Bonnello: You’d hope so. Or at least not automatically think, ‘oh you’re not capable of anything.’

Kat Williams (A-UK): Well, exactly. I think that’s something a lot of teachers should read as well. You know, especially because characters (I’m not going to give anything away) the characters do have the typical spiky profiles that a lot of us have and I think that people can equate difficulties in some areas with having difficulties in all areas and we know that’s not the case and these books demonstrate that that’s not the case.

A question that can be a little contentious – I’ve seen it sparking debate on the internet – do you think that publishing deals for books containing neurodivergent characters should be given to neurodivergent writers over neurotypical writers? Assuming that they are of the same quality and there’s one deal, do you think the neurodivergent author should be prioritised?

Chris Bonnello: I can see why that’s a contentious question. I suppose my answer to that is first and foremost Autistic people need to be leading the autism discussion. That is not to say that’s to the exclusion of absolutely everyone else. You mentioned earlier about me trying to have a balanced attitude towards autism. Occasionally I make myself a bit unpopular by saying actually yes non-Autistic parents should have at least some kind of voice in the discussion because they do have experience in this area. That is not to say that they should lead the conversation, but to say that non-Autistic people should be entirely excluded I think that’s possibly taking it too far.

In terms of publishing deals, I would love to say a simple yes to your question that neurodiverse authors should be the ones to write neurodiverse fiction. Pragmatically I know that the publishing world just simply isn’t like that. You don’t get published because you’re a neurodiverse writer. You don’t even get published because you’re a good writer. You get published because your stuff is marketable. That’s a fairly painful realisation. As an unpublished writer I knew that some of the stuff I was writing was probably better than some of the stuff that was out there. It was certainly better than Fifty Shades of Grey. But now as a published writer, I’m equally uncomfortable at the fact that there’s loads of unpublished stuff out there that is better than mine, it’s just what’s marketable.

The solution to this in my mind is why don’t we shape the narrative around autism and neurodiversity so that it becomes more marketable for stuff to be published by Autistic/neurodiverse writers? I think we are heading in the right direction. There’s Diary of a Young Naturalist which has just come out by a sixteen year old Autistic author, there’s Chris Packham’s work, there’s just so much that’s beginning to come out that you just wouldn’t have seen ten years ago. I think we’re heading in that right direction.

Kat Williams (A-UK): It’s good, and you’re right. It is about whether something is marketable, but that also means that you have to be able to sell your idea to a publisher and Autistic people (and I know I’m generalising which is something that we don’t really like, but I think that it happens to enough of us) we’re not the best at marketing ourselves. We can often struggle to say, ‘hey I’ve done this and I’ve done a really good job,’ because we’ve spent our lives being told that what we’ve done isn’t good enough, or is not quite right, or is different and different is always shrouded in ‘different is bad,’ so I think that we do need to be able to sell ourselves in order for our things to become marketable.

You are right, getting the narrative changed is going to definitely increase the number of us that are able to be published and get our stories out there, because I’m sure there are loads of Autistic and otherwise neurodivergent writers that are producing brilliant work but don’t even know where to start.

Chris Bonnello: I occasionally get email from some asking, ‘I want to become a published author where on earth do I begin?’

I think one reason why there’s so many Autistic writers is because it’s good escapism to write. Similar to why I was writing the Underdogs books in the first place (or the Guerrillas books back then): when the real world doesn’t give you much control or influence – and everyone needs a sense of control, not in a controlling manipulative kind of way, but you want to have some kind of autonomy over where your life is going – in a world where that’s not often afforded to Autistic people, it’s so therapeutic to create your own world where actually yes, you do get to decide the rules. You do get to decide what happens. You have full autonomy over what goes on in this universe of yours.

Kat Williams (A-UK): It’s strange because it still seems that non-Autistic people equate being Autistic with a lack of creativity and imagination. While we know this is untrue do you think it’s more difficult to sell yourself as an Autistic creative writer with that bias?

Chris Bonnello: When I give advice – and this doesn’t sound like I’m answering the question but I’m getting there – when people ask me, ‘I’m trying to get a job, should I let the interviewer know I’m Autistic?’ I ask, ‘okay, why?’ They say, ‘I don’t know, just so they know.’ Strategically, why do you want them to know?

The general strategy I have is tell the interviewer that you’re Autistic if you think it’ll make you more likely to get the job rather than less likely to get the job. For example, I’ve only dropped the ‘A-bomb’ as I called it at the time once during a job interview. I actually ended up getting that job and I’m notoriously terrible at job interviews. I was very aware that I wasn’t talking very fluently in the interview and I thought, you know what? Just for the sake of experiment we’re going to see what happens here. I told them I’m Autistic, which means I’ve got the perfect kind of brain for this job. I’ll be able to do this, that, and the other, but one thing that’s not in my skill set is answering interview questions. So, if you would hire me you’d be getting this kind of person but please don’t take a lack of fluency here as a sign that I wouldn’t be good at the job. Turns out they did give me the job. Now, had I said, ‘yeah I’m Autistic which means I can’t do this, I can’t do that, but I’ll be a good employee really…’

It’s a similar situation here. If you believe that telling a publisher about you being Autistic makes them more likely to accept you – and again it’s a very difficult thing to call because publishing is made up of individuals anyway, maybe it’ll work maybe it won’t, it depends on the person reading it. But if you think generally speaking it will make you more likely to be accepted then [tell them], if not then [don’t tell them] it’s none of their business.

Kat Williams (A-UK): That’s a really good point. I think that if you’re writing about autism or Autistic characters then it could be beneficial but you are right, it isn’t really their business so people don’t have to disclose if they don’t want to.

I know that you have finished writing the third book…

Chris Bonnello: And the fourth

Kat Williams (A-UK): And the fourth! I thought you had as well.

Chris Bonnello: One of the only good things that’s come out of this lockdown [is that] I’ve finished the final book in the Underdogs series. It took me 10 years 4 months! But I finished what I started.

Kat Williams (A-UK): Which is incredible! I am in awe of anybody who can have the focus and the drive to get it done.

Do you have any plans to write any other books? Be them fiction or non-fiction? Or are you going to have a bit of a break and think about it?

Chris Bonnello: The thought of a break from writing doesn’t really appeal to me. The more I think about the Underdogs universe, the more ideas I have about it. Some of them I don’t want to say during an interview because then it’s on record and I might be committed to it, but one thing that I’m quite open about is after the fourth in the series presumably/hopefully gets published is a short story anthology called Tales of the Underdogs where each of the thirteen major characters gets their own short story. Three of them are already written, they were published on Unbound the publisher’s website as thank you presents for the people who pre-ordered the second one and when the (assuming that happens) third one goes to its crowd funding stage I’ll be presumably doing the same thing again with another three short stories from another three of the Underdogs’ perspectives. It would be nice at the end to publish a short story anthology so that people have more stuff to read about the underdogs because, let’s be honest, like I said earlier I could write the Underdogs series with the most exciting plot line or the most boring plot line as possible it doesn’t matter as much as people might think because people just generally read it for the characters. Well yeah, and the action,  but the main thing is the characters.

Kat Williams (A-UK): They are brilliant characters.

Do you have any advice for aspiring Autistic creative writers out there? Anything like set processes? A certain number of words written a day. Do you have a plan on a writing day? Or do you just sit down and let it flow (or not) depending on the day?

Chris Bonnello: It probably sounds like a cheating answer when I say find out what works for you and do it, but it honestly is the best advice I could give.

Ten years ago, my method was to walk down to the village, have a pub lunch whilst writing a story on the laptop. These days the best way of doing these things now I’ve not only got a job, I’ve got about four jobs, these days one way that I try to stave off work related stress is by deciding that once I’ve had my dinner it is Underdogs time. I don’t have to answer any emails, or perform any kind of responsibilities I just sit down if I do anything it’s writing or editing Underdogs. At different times of my life different methods worked for me.

The most important bit of advice that I give to Autistic people, and people in general when it comes to creative writing is write what you love, don’t write what you think will be marketable. By way of example, the original Guerrillas was not in the least bit marketable and I did not write it with the intention of publishing it because it’s ridiculous! Who on earth is going to publish something like that? It’s seriously unrecognisable the series as it stands now compared to the first draft. That was okay. You don’t need to publish stuff in order for your creativity to be valid. You don’t even have to be a particularly good writer for your stuff to be valid. But let’s say that you actually do want to publish and you do actually want a career in writing. Even then, write what you love don’t write for the market.

Remember when the Twilight series came out? Suddenly there was a whole explosion of vampire romance fiction and a bunch of other stuff got published that was kind of in a similar vein. That was a case of good timing. The ones that were published were very unlikely to be the ones that were copying or mimicking the Twilight series. They just happened to be from authors who had also written paranormal romance and it happened to be marketable. The people who read Twilight and then immediately began to write their own vampire fiction because they thought, ‘ooh, I think that’s marketable now,’ they would have got rejected by publishers because it takes about a year or two years to publish a book and by then the market has moved on.

All of those people who wrote knock off Twilight books (with the exception of Fifty Shades of Grey but again, that’s a different genre) those who tried to mimic what was already out there to follow the market would have ended up submitting their vampire romance around the time when suddenly teenagers fighting to death in The Hunger Games became the marketable thing. Then people writing Hunger Games knock offs started submitting their books to publishers around the time when The Hunger Games was done and they were looking for the next big thing.

The market moves too fast for any writer to really keep up with. Write your stuff, write what you love, and if you’re – I don’t want to use the word lucky, as Ewan repeatedly says in the Underdogs books, it’s never luck – but if you are fortunate enough the stuff that you’ve written may be in demand one year where it wasn’t in demand a previous year. I’m not sure if that sounds particularly motivating or not but it is entirely true unless you want to go down the self-publishing route which is fair enough. Lots of people do that, lots of people make a living from it. But if you want a traditionally published book write what you love and make it as good as you possibly can. Then comes the marketing thing which is a completely different skill and one which I don’t profess to have any expertise in.

Kat Williams (A-UK): Which is fair enough. I know a couple of authors and they also say just because you’ve received one rejection it doesn’t mean that the next one will be but you tend to get more rejections than acceptances even if your stuff’s really good because different publishers publish different types of work. You also need to research what they are putting out there because that is just as important.

Chris Bonnello: Just adding to the point you are making, writing a good book and getting a good book published are two entirely different skills. I knew enough about it to know that if you don’t know the name of the person you’re submitting to and write, ‘Dear Sir/Madam’ or ‘Dear Submissions Team’ then they’re not going to be particularly keen.

Let’s say that you’re Mrs Jones and you are submissions manager for John Smith’s publishing company, John Smith being its founder who died in 1890-something-or-other, and you get a letter addressed to ‘Dear Mr John Smith’. You’ll think, ‘yeah you’ve not really researched this, have you?’ If you specifically say no Fantasy or Sci-Fi and then someone submits Fantasy or Sci-Fi, ‘just in case because it’s so good that they’ll have to say yes to me…’ Follow the submission guidelines to the letter. Show that you have some basic respect for the people who you want to publish your book and spend years working on it.

Kat Williams (A-UK): Very good advice there.

A final question. If you could change one thing to improve the lives of Autistic people worldwide, what would it be? A difficult question, I know.

Chris Bonnello: A million pounds in the bank account of every Autistic person. Some of it to be used as some kind of fund to raise actual meaningful awareness of autism and having a nice solid pro-autism promotional campaign which will lead to a reduction in the unemployment rate, a reduction in abuse in residential homes and so on, all these other major problems that exist with Autistic people. It’s not a particularly realistic answer, of course, but it’s a difficult thing to answer because there’s so many things to fix.

One thing realistically that we can try and do as I said earlier in the interview, try and change the narrative about autism and help change direction so that people a) get to see the positives that exist within Autistic brains and b) have a meaningful understanding of the challenges we face and c) make sure that we are being defined by our strengths rather than by our weaknesses. Having weaknesses etc understood, but not being the defining factor in our existence.

Other than a million pounds in every Autistic bank account doing us a lot of favours, lets face it, most of us would just spend the million pounds on our special interests (we’d be right to do so as well). But whereas you can’t solve every problem by throwing money at it, having some sort of massively well-funded campaign or drive to raise meaningful awareness of how valuable, worthy and valid Autistic people are can only be a good thing, right?

Kat Williams (A-UK): Absolutely, and a lot of the answers to that question rely on funding so your answer could well be the thing that solves all the problems because that would be the money to fix all of the other ideas.

Chris Bonnello: Fun fact: I once lost a job in a special school along with half the staff because they couldn’t afford to pay us. The school found itself half a million pounds in deficit; officially nobody knows how. Then they came up with this ‘forward thinking initiative’ that was to ‘raise standards’ or some rubbish like that which just happened to involve doubling the class sizes and halving the staff. Some of us expressed concern that very fast teenagers with profound disabilities and literally no sense of danger, ‘oh, they’ll be fine with less than half the adults around and their attention being divided by twice as many students.’ When speaking to senior management, ‘ooh, it’s just for the sake of data points… oops I’m sorry, I mean students.’ So I have some fairly personal experience about what happens to really good schools when the money runs out. More importantly, what happens to vulnerable people when the money isn’t there to support them.

So, it sounds like a very shallow answer: just give a million pounds to every Autistic person. Yeah it was a very tongue in cheek semi-humorous answer. But let’s be honest: money does talk.

Kat Williams (A-UK): It does. It makes the world go round, as they say.

Chris Bonnello: It shouldn’t, but it does.

Kat Williams (A-UK): It does. Well, thank you so much, Chris.

 Chris Bonnello: Thank you for having me.

Kat Williams (A-UK): It’s been lovely talking to you

Chris Bonnello: Likewise

Kat Williams (A-UK): And everybody, if you don’t have the books already then please buy Underdogs and Underdogs: Tooth and Nail. You can buy them on Amazon, I’m sure you can buy them from other book sellers.

Chris Bonnello: Yeah, Waterstones, lots of places.

Kat Williams (A-UK): During lockdown Amazon is possibly the easiest place for a lot of people, but other book sellers are available. Thank you so much for your time and I really hope that Unbound do go ahead with publishing books three and four. Thank you.

You can watch the conversation in full here:

Statement: On the NAS’ removal and reinstating of Mermaids’ information

This is a statement regarding the National Autistic Society’s decision to remove information from Mermaids, a trans youth support network, from their website. This also discusses their decision to reinstate it after mass objection online. This occurred over the week commencing 01/10/2018.

Continue reading “Statement: On the NAS’ removal and reinstating of Mermaids’ information”

Statement regarding the Resignation of Autistic and Disabled MP Jared O’Mara from the Labour Party

The following is a statement regarding the resignation of autistic and disabled MP Jared O’Mara from the Labour Party. This comes shortly after his reinstatement after being temporarily banned from the party after allegations were made of homophobia and misogyny online.

[A link to the BBC article concerning this can be found here.]

It is true that disabled people, autistic people, and people who fit into the wider neurodiversity umbrella – are not given a voice within UK politics as a whole. Mental health, too, is a topic only recently brought into discussion.

For this reason and this reason only, it is a shame to see a disabled and autistic member of parliament resign from their party.

Autistic UK believes that O’Mara’s resignation from the Labour Party, and his continuation to serve as an MP for Sheffield Hallam, is a failing on his part to uphold his role to represent his constituents, his party, and to autistic people as a whole.

As a representative of the UK, O’Mara – like all MPs – is to be held responsible for his past and present actions by the public. Whilst, as stated, his actions were not necessarily “criminal”, to excuse discriminatory actions in the form of harassment and victimisation online as such is disgraceful.

There is a notable difference between behaviour that is considered “poor” because autistic people misunderstand a society that does not work for them, and discrimination. There’s a notable difference between laughing during a cinema screening and discriminating against women and LGBTQ+ people. Discriminatory, cruel and vindictive behaviour is not due to an autistic person’s relationship with society and is, like neurotypical people, entirely upon themselves.

Autistic UK stands against all forms of discrimination. We will never condone an individual using their place in one discriminated group as an excuse, however veiled, to discriminate against others.

It is true that people do change and a person should not solely be judged by their past. However, any individual must be held responsible for their past actions if they have not openly done so already. To refuse to acknowledge your past only causes more harm to those you have harmed and failed.

Through his recent actions, he has – whether consciously or not – made his prior comments, his resignation, and his treatment by the party as a whole, about being autistic. A decision that undermines autistic and disabled people as a whole.

Using your place within the autistic community – or any marginalised community – to excuse discrimination is incredibly dangerous and is a method used widely within certain circles to excuse white, often male, violence against women. Using the fact you are autistic as an excuse for poor behaviour only serves to damage the reputation of all autistic people.

It is deeply hypocritical to accuse a political party of not sharing a “commitment to the true definition of equality and compassion” when suspended for misogynistic and homophobic comments that go against the exact beliefs stated.

The fact an individual is disabled, mentally ill, neurodivergent or a mixture of these neither explains or excuses behaviour that is abhorrent, and O’Mara’s unwillingness to accept a formal warning and attend any form of training shows an unwillingness to accept and learn from his past wrongdoings.

We, too, would like to suggest reading about autism. However, we would also particularly like to highlight the use of autism and autistic people as a scapegoat for wider discrimination.

Hans Asperger.

Read the full story here:

We understand this story is causing considerable debate, and also will cause a lot of strong emotions from within the community. That’s perfectly natural, and we hope the debate that ensues will be respectful and productive. 

For those who feel upset, hurt, angry or worried about this story, that’s absolutely understandable. We’re feeling that way too. And we’ll be here to support anyone who wishes to find others to talk to about this news.

 

 

 

we will publish a longer statement in due course.

Interview with Emily Swiatek

Emily Swiatek, an Autistic Woman who was one of the stars of the Channel 4 Documentary ‘Are You Autistic?’ , has kindly given some of her time to be interviewed by Autistic UK, about the programme, and some of her experiences! Emily also works as an employment training consultant for the National Autistic Society.

 

If you haven’t yet seen ‘Are You Autistic?’, you can watch it here 

 

Ryan Hendry (Autistic UK); Firstly, thank you Emily for taking the time to answer our questions, I am sure you are very busy after the airing of last nights program!

This programme originally had a very different initial concept. But, with the involvement of Autistic People such as yourself, it seems as if there has been an entire change of thought, and the programme went in a completely different, and I have to say, much more positive direction. Would you be able to tell us, how did your involvement begin with the production, and how you felt you were able to help change the show’s production?

 

Emily Swiatek; I’ve been involved in the programme from the very early initial concept stages back in 2016, where I and a few other staff members from the National Autistic Society met with the team from Betty TV. I’ve worked on a few other TV shows, but this one felt different – fresher, more positive and from the start there was the desire to have a strong autistic voice and a lot of representation of autistic women.

TV shows often go through a number of different stages when they’re being made and the initial concept will look dramatically different to the end product -that was certainly the case for this show and it meant we ended up with something really great. I worked on the TV show predominantly in my own time, not work time, and gave as much feedback as I could on the things that I felt would help make the show a more positive experience for autistic people. I was disappointed when the initial launch of the show had the title that it originally did and I’m really glad that the production company and the channel listened to the feedback they received. Obviously, I was just one voice and I am so pleased that the Ambitious Youth Council also got involved and that their voices featured so strongly in the final show. I think it helped it become something even better than I’d dared imagine it could be right at the start.

 

Ryan; “Are You Autistic?” Also showcased Autistic Women, and very much put them in the centre of the stage for this show. With the old stereotypes of girls not being able to be Autistic, do you think this was an important step in breaking apart some of the old stereotypes and myths?

 

Emily; I think I this show is so important in breaking apart the old myths and stereotypes around autism. Obviously, there’s still a long way to go and a one hour show isn’t going to completely dismantled decades of built up ideas, but I think it’s a powerful step in the right direction. I can’t think of the last time that I saw so many autistic women so publicly celebrated and it’s a real credit to Betty TV that they listened and championed the idea that autistic women needed our profile raising in a major way. It’s really cool that the study showed this too -47,000 out of 87,000 potentially autistic responses were women.

One of the next steps will be making sure we move away from such a defined gender binary approach, as I think it’s really important that we start to have conversations about the issues trans people experience in accessing diagnosis. And although this wasn’t a totally white line up, I think it’s important to acknowledge that it was predominantly white and that we’ve still got a long way to go with making sure autistic people of colour are also given public platforms to discuss the issues they face due to prejudice and stereotypes.

 

Ryan; Appearing on National Television must have been a big challenge. You, and the others, all did an exceptional job in presenting the show. But was there anything that had to be changed behind the scenes in terms of how the show was filmed/produced, in order to allow you and the others to be at your best?

 

Emily; I really love doing TV and don’t find it all that stressful – it’s quite similar to my day job! I actually provided training for the whole production team at Betty TV before the show started filming as I thought it was really important that any autistic people who were involved had our needs met as well as could be. The team were superb – no ask was too big and they did a lot to accommodate us from sending out photos of the team in advance to asking a busy London pub to turn off their music and coffee machines so we didn’t have a melt down. They were consistently open to feedback on how our needs could be met and what they could do better to make sure the process was as stress free as possible for us.

 

Ryan; For anyone who watched “Are You Autistic?” And feel that they may indeed think “hey, that all makes sense to me now!”, and wish to obtain a diagnosis, what advice would you give to them?

 

Emily; I think my first piece of advice for people who are thinking about obtaining a diagnosis would be to stop, breathe and take a moment. It can feel really confusing and overwhelming when you first start looking into autism. After that, I’d suggest doing some research and start listing the traits of diagnosis that you relate to. You might want to ask friends, family or partners for their observations, although be aware that sometimes it can be hard for the people around us to say these things. Unfortunately, there are still a lot of stereotypes but that’s why asking people close to you to watch the show is a great opportunity to start to change those ideas.

Once you have your list, you can start pursuing a diagnosis. In the UK, we can go straight to our GPS and ask for a referral for a diagnosis. Sadly, as was mentioned on the show, waiting lists can be long and there’s not always the expert knowledge in diagnostic teams – this is why so many of us haven’t been diagnosed already. You may wish to peruse a private diagnosis if you have the means to do so and want a quicker process – I personally got diagnosed at the Lorna Wing centre and had an incredibly positive experience.

One of the most important things to know is that within the autistic community, we are very welcoming of people who self define as autistic because of the systemic issues people face in accessing diagnosis. The “official” diagnosis helps a lot of us have that peace of kind and self understanding that can be so essential for our wellbeing, but ultimately, it isn’t the diagnosis itself that makes us autistic. If you’re autistic, you’re autistic – it’s the way your brain is wired and that won’t change.

 

Ryan; Could you tell us, did you have a favourite moment during the production of the show? Perhaps a behind-the-scenes moment that made you realise “wow, what we’re doing here could be huge”?

 

Emily; I have a lot of favourite moments from working in the show, although I’ll be honest and say I never expected it to be as popular as it’s been! One of the highlights for me was that the show has bright some incredible autistic women into my life – there’s so much solidarity and encouragement to be found in connecting with people who understand the world like you, and that’s been a wonderful experience.

And the night of the show itself airing was wild – my Twitter was non-stop all night and the overwhelming majority of it was positive and encouraging. That’s the thing that makes me think that this show is actually something quite special and important.

 

Ryan; finally, is there anything you would like to add, that we perhaps haven’t asked about?

 

Emily; I think it can be hard sometimes when shows about autism are put out. It’s understandably a very emotional and triggering topic for many of us on the spectrum – from doctors who don’t believe us to experiences of bullying or ridicule, autistic people have often been through a lot. Sadly, there have been times where the medical profession has not helped with that and times where the media has continued to reinforce those narratives.

Change is slow and that can be extremely frustrating – one of them moments I was personally most disappointed with was when I referred to “having autism” instead of “being autistic” – a hangover from over 10 years of working in the autism profession and also perhaps a little bit of nerves (and it was flipping cold). The show for me was a net positive. Was it perfect? No, but then again, what is? Sometimes change has to come through working with those imperfect methods, by being the people to do some of the gentle challenging. That’s not to say that anger isn’t a valid and legitimate tactic, but i personally try to find the ways to work with people and bring the change about from within. It’s a slow process but I’m hopefully that ultimately, we will start to see a change in the world that means as autistic people we aren’t just known about but fully acknowledged and accepted as who we are.

 

 

 

Spinnaker Tower, Going Gold!

Autistic UK is proud to announce that the Spinnaker Tower in Portsmouth, Hampshire will be lighting up and Going Gold on April 2nd, World Autism Awareness Day.

This is an open invitation to any who wish to join us there to celebrate the day and show their support for Autism Acceptance. We extend a welcome to all Autistic persons of all ages along with their parents, families, friends and supporters.

Wear something yellow/gold or bring balloons of that hue. Paint a picture, your face or whatever you want as long as you are there to wear, display or hold your choice of showing support.

To find out more about the Going Gold campaign, go to our website at the address below. There will be more detail about the running order when we are better able to know how many people will be coming, so keep an eye out on https://autisticuk.org/going-gold-for-autism-acceptance/

Directions to the Spinnaker Tower can be found on its website here; https://www.spinnakertower.co.uk/plan-your-visit/how-to-find-us/

We hope you will come on the day and join us in first thanking the Spinnaker Tower for their support on this.

We will see you there!

 

 

link to the event; https://www.facebook.com/events/2233686840206985??ti=ia

Autistic UK Statement on proposed closures of SEN schools in Belfast;

Autistic UK Statement on proposed closures of SEN schools in Belfast;

Autistic UK would like to place on record it’s grave concern at the announcement by the Education Authority in Northern Ireland on Monday, to close SEN schools and to create three larger so-called “super schools”.

Autistic UK believes this is simply a cost-cutting exercise that is being dressed up as a “transformation” of services.

Increasing school and classroom sizes has tended to have a negative effect on the educational standard a child receives. This also has the potential to have classrooms made up of children with widely varying needs, which will mean that it is not possible to give each child the specialised support they require.

Autistic UK further notes that the Education Authority’s decision to announce this plan on a public holiday gives the impression that this plan was not something they wished to see receive media attention.

Parents have only found out through the media that their child’s school may close, and this has sparked widespread panic, upset and anger.

Autistic UK is calling upon the Education Authority to give parents and schools accurate and honest information, regarding these potential school closures.

Autistic UK also urges the Education Authority to ensure that stakeholders will be given enough time to adequately respond to the proposals.

National Diversity Awards; Emma Dalmayne

Autism Rights Campaigner Emma Dalmayne has been nominated for the ‘Positive Role Model Award – Disability’ Award, as part of the National Diversity Awards.

 

We are urging all of our supporters to vote for Emma to win this award. Here at Autistic UK, we believe that Emma’s sterling work to protect Autistic People from toxic and poisonous ‘Autism Cures’, deserves to be recognised.

 

To vote for Emma, click on the following link, and then follow the on-site instructions;

https://nominate.nationaldiversityawards.co.uk/nominate/endorse/31945

 

 

My name is Emma Dalmayne. I am an autism rights campaigner, I campaign against abusive autistic treatments and ‘cures’.

I am Autistic myself,when I was diagnosed with Aspergers at age 37 it was such a relief, to know and understand why I had always felt like I had wondered into a conversation or situation everyone else had prior prompting and scripts too!

My youngest son was diagnosed before me which led to me opening a Facebook support group for autistics and parents/carers. I became aware that not all parents are as accepting of Autism as I after seeing a group named CD Autism on Facebook. I began campaigning against autistic mistreatment, in particular MMS which is chlorine dioxide bleach being used in enemas and oral solution to ‘cure’ Autism.

I have worked with the BBC, BEN TV,The Independent, The Mirror, Victoria Derbyshire Show, The Guardian, The Times and London Live to expose this vile abuse. I have infiltrated Facebook groups under fake profiles to find out where these parents are who are using these vile torturous treatments on their vulnerable autistic children and adults.

Once I know, I report them to the police and social services. This has resulted in two children being removed from abusive homes. It also has the back lash of me receiving threats of rape and death. I have had trolling emails and messages, Twitter abuse and phone calls, vile blogs written about me. Thus is what we as campaigners endure

I have spoken before the Public Policy Exchange and the NHS Advisory Committee. We are working on a leaflet to be handed out in hospitals and paediatricians with red flags listed for MMS abuse. I have reported countless abuse cases worldwide, it greatly hurts me to look at my own autistic children and think if they had have been born to the wrong families…who knows.

It’s not only bleach being used on autistic vulnerables, it’s turpentine, borax, kerosene, GcMAF. So much pain being caused and for nothing.

There are harmful ‘therapies’ using compliance :

And more dangerous substances here:

http://www.dailymail.co.uk/news/article-4795094/NHS-worker-fed-toddlers-TURPENTINE-cure-parasites.html

I made a petition asking that the government make touting, selling or using fake cures illegal in the UK. It now has 60,500 signatures here:

https://www.change.org/p/phillip-dunne-make-autistic-cures-illegal-in-the-uk

This led to this piece here;

https://www.theguardian.com/society/2016/jul/13/fake-cures-autism-prove-deadly

And then many more, sadly because of the amount of parents I was reporting.

https://www.mirror.co.uk/news/uk-news/brit-kids-forced-drink-bleach-11924623

I recently went to the National Autistic Society for a meeting with to ask them again to please consider backing legislation. They finally, after four years, agreed. I was accompanied by Kieran Rose and Richard Mills. The meeting can be heard here;

https://youtu.be/Wx836G_nBrk

I was consulted on the Westminster Autism Commission survey for fake cures and I have been invited to the launch on the 28th of March to parliament for the resulting report.

I love to write! I began writing a few years ago and have a website called www.autisticate.com 

I have had the joy of having my first book published!

It’s called ‘It’s An Autism Thing I’ll Help You Understand It’ and you can see it on www.stass publications.co.uk

I wanted, no needed parents and professionals to see things from an Autistic perspective, and to help them understand behaviours and self stimulation.

Too many times I’ve seen the urge to understand stifled in the curious as they are palmed off with ‘It’s an Autism thing, you wouldn’t understand it!’

I thought well let’s help then to! Hopefully the empowerment the parents and carers will feel can help make their charges feel more understood and supported.

I continue to write with and have another two children’s books, one published called Susie Spins,a book to educate children about their autistic peers, and another penned and ready to go.

I have opened an organisation called AIM – Autistic Inclusive Meets. www.autisticinclusivemeets.com

I have a wonderful diverse board of directors, a mix of autistic and neurotypical.

Our aim is to encourage and support autistic individuals out into the community in inclusive environments. We run a weekly playgroup that is well attended by autistic children right up to teens along with brilliant autistic adults that volunteer their time to interact with the children and help advise the parents.

We have meals out and sensory friendly discos,we are not are open to all boroughs and take pre-diagnosis. All people with disabilities are welcome.

We have recently been very lucky to gain some support in raising funds and spreading autism acceptance from Nandos 02!

Thank you for reading!

Emma