21 Apr 2015

Masters Assignment on Autistic Writers

In 2013 I submitted as assignment on autistic people's writings as part of my Masters in Autism (Adults) for the University of Birmingham. The title of the topic as set by the university and my essay follows: 

There is an ever-increasing body of literature from people diagnosed with autism who are willing to share their experiences. Discuss and evaluate the potential impact of this body of literature upon other people on the autistic spectrum, upon autism researchers and upon providers of support and services.

This essay will describe the growing body of writing by autistic writers, particularly that which has flourished with the general increase in internet availability. It will show evidence of the significant impact these authors have had on research, on support and service provision and on the lives and experiences of other autistic people and their families, including the author’s own. Finally it will examine how autistic writings could impact even further in these areas in the future.

The essay follows the convention as in Sinclair (1999) of employing the term ‘autistic person’ rather than ‘person with autism’. In the author’s experience, the majority of autistic people, including autistic writers, have expressed a preference for this terminology.

Before examining the literature, I shall provide some illustration of the impact of autistic writings from a personal perspective. My son was diagnosed with Autistic Spectrum Condition when he was two years old and I read widely to determine how best to support and help him. All the books I read were written by autism professionals and while they were extremely helpful, I still had more questions than answers so I sought help online. The first websites I perused predicted dire outcomes for my (at the time) non-verbal son unless I engaged him immediately in biomedical or intensive behavioural therapy and they presented autism as a facet of the person that could be removed with just the right type and level of intervention. These websites encouraged me to aim to make him ‘indistinguishable from his peers’ but investigation of the techniques promising to normalise my autistic son established that their claims were based on little to no conclusive evidence. Instead I enrolled him in a specialist nursery school and he received speech and language therapy, the primary benefit of which was teaching me better ways to engage him and promote his communication.

In time I took part in a National Autistic Society (NAS) EarlyBird programme which aims to support parents of pre-school autistic children by ‘empowering and helping them facilitate their child's social communication and appropriate behaviour in their natural environment.’ (National Autistic Society, n.d.). I also joined a support email list with a membership comprising autistic adults and the parents of autistic children and young people. Via these I discovered the books of well known autistic authors like Temple Grandin and Donna Williams and for the first time read personal accounts of autistic lives and experiences.

Around the same time I found the site ‘Ooops...Wrong Planet!’ run by a Canadian autistic woman (Norman-Bain, n.d.) which at the time contained articles about all aspects of autism, most written by autistic people. One of the most challenging and ultimately transformative articles I read then was ‘Don’t Mourn For Us’ (Sinclair, 1993) in which parents are invited to join autistic adults ‘in strength and determination, in hope and in joy’ to teach, care and advocate for autistic children. These writings helped me change my goals for my son; from then I wished to accept and embrace his autism, to maximise his potential, to increase his opportunities and to work towards making the world a better place for people like him.

In 2006 I started to blog about my children, their education and autism (McDaid, 2006) and I joined other parents of autistic children, autism professionals and autistic adults in a blogging collective; The Autism Hub. This led to the steepest part of my learning curve on autism and disability mainly due to the interactive nature of blogging. The articles and blog posts I read by autistic authors and the discussions we had, challenged my thinking and assumptions on the most fundamental aspects of our shared humanity. Some of the autistic writers I connected with over the years became good friends, many were able to advise me on issues I faced raising my autistic son and all helped to deepen my understanding of disability and autism.

According to Baggs (2006) the first published autistic author was David Eastham whose book of poetry was published in 1985 (Eastham et al., 1985). Since then dozens of books and book chapters have been written by autistic writers, many of whom have gained recognition among the general public. One such writer is Daniel Tammet whose memoir ‘Born on a Blue Day’ was a best-seller (Tammet, 2006) and who appears frequently on television and radio shows. Also well known is Temple Grandin who has written 8 books, the first of which was published in 1986 (Grandin and Scariano, 1986) and who was the subject of the semi-autobiographical TV movie, ‘Temple Grandin’ (2010).

But the real revolution started when autistic people began to congregate online in increasing numbers to self-advocate, offer support, share information, socialise, educate and entertain. They wrote about the representation of autism in the media. They reached out to parents telling us how we could better understand and support our children (Grantham, 2011) and encouraging us to become more informed allies (Schwarz, 2004). They have written on how we must work towards real and meaningful inclusion (Evil Autie, 2013). They expressed justifiable anger for the abuses, vilification, silencing and neglect they have endured. They proved their resilience and strength, their bravery and compassion in the way they supported each other and continued to fight for their rights.

They found common ground with the general disability rights movements, rejected the prevailing medical model of autism, promoted social model ideas based on the concept ‘nothing about us without us’ and clarified that they are the real experts on autism. They faced tremendous barriers in their efforts to instigate a rights-based model of autism advocacy. Their ideas have been misrepresented and they have even been accused of lying about their diagnoses (Lutz, 2013). But they forge on and via their writings, autistic people proved that being unable to talk is not synonymous with having nothing to say.

Autistic writers introduced the concept of ‘neurodiversity’:

‘… a word that has been around since autistic people started putting sites on the internet. It has since been expanded to include not just people who are known as "autistics and cousins", but to express the idea that a diversity of ways of human thinking is a good thing, and dyslexic, autistic, ADHD, dyspraxic and tourettes people to name but a few all have some element in common not being neurotypical in the way our brains work.’
(Arnold, n.d.)

The crux of neurodiversity is that it is ‘part of the general idea that disabled people should have human rights’ (Dawson, 2007).

Clearly autistic people don’t comprise a homogenous community. As in any disparate collection of people, disagreements are common but people speaking their mind and sharing their perspectives leads to positive change.

Autistic people diagnosed with different categories of autism, from disparate backgrounds and possessing a variety of skills have contributed to this growing body of work. They may be university educated or living in a group home or have experienced homelessness. Some communicate using forms of augmentative and alternative communication (AAC), others have high levels of verbal acuity. A number of them require help with many aspects of everyday life, others are raising families or running large companies. There are autistic writers who share their desire to cure their condition. Many have co-existing medical conditions or write about the intersection of autism with other aspects of their lives. There are people who fit all the previous descriptions in some ways or at some times and more yet who defy categorisation but all share characteristics that define autism.

The democratisation of writing via the internet has meant that people no longer must find a publisher before their ideas can be shared with the public. Moreover, comments sections and social media sites like Tumblr, Facebook, YouTube and Twitter encourage interaction so there are fewer passive readers but a growing group of participating readers and writers. The tools for communicating online continue to change in pace with technological advances and autistic writers are adept at using every means available to share their messages.

This body of literature by autistic writers has demonstrably impacted significantly on other autistic people. My understanding of my own autistic son has been enhanced by all the articles and books by autistic writers I have read over the years and our interactions. They helped me reach acceptance of his condition faster than I otherwise would have and raised my expectations for his future happiness.  

Autistic writers have been successful in getting their messages across on their own blogs and forums but also via mainstream media. Although the typical depiction of autism in the mainstream media is still of a young child and the negative impact on the family of the child’s disability, articles based on interviews with autistic self-advocates are also reaching wide audiences. Saner (2007) reported in The Guardian on autistic self-advocates and allies. More recently, The Guardian had an article about businesses seeking out autistic employees and the autistic young people making a success in their careers (Hill, 2013) which will impact on and encourage other autistic people.

Hacking (2009) writes about ‘autism narratives’ which ‘are creating the language in which to describe the experience of autism, and hence helping to forge the concepts in which to think autism.’ He considers four published autistic authors and suggests that autism fiction and autobiographies will influence future generations of autistic writers ‘who will give accounts that are textured by the early exposure to role models.’ He also explores the tendency for publishers to insist that these autobiographies provide otherwise impossible glimpses ‘inside the [autistic] mind’ a claim, he says is lacking in their promotion of non-autistic biographies.

McGeer (2009) writing about Hacking (2009) suggests that autistic peoples’ writings have an immense impact on other autistic people:

As their external environment changes—as it becomes more enriched from the perspective of offering more informed, and hence more suitable, kinds of emotional and physical support, teaching and therapy—so too will their own developmental prospects be transformed. (…)
If autistic self-narratives have the power to change those conditions for the better, then autistic self- narratives have the power to transform what it is to be autistic.’

The Loud Hands Project is a community based, multimedia publishing and creative effort by the Autistic Self Advocacy Network. It has already sourced funding via donations from the online autistic community for an anthology of autistic writing which was published last year (Bascom, 2012). This book collates previously published material alongside new articles and each author is autistic. Julia Bascom, project founder and editor of the book writes in its foreword about the how important autistic writing is to other autistic people. Without exposure to such literature autistic people can grow up feeling adrift and isolated :

One of the cruellest tricks our culture plays on autistic people is that it makes us strangers to ourselves. We grow up knowing we’re different, but that difference is defined for us in terms of an absence of neurotypicality, not as the presence of another equally valid way of being. We wind up internalizing a lot of hateful, damaging and inaccurate things about ourselves, and that makes it harder to know who we really are or what we really can and cannot do.’
                                            (Bascom, 2012, p.7)

Autistic people have described the sense of community they feel from the increasing prevalence of fellow autistics’ writings. They are collaborating with an increased sense of power and strength in numbers. They challenge the rhetoric of their lives as ‘less than’. They worked together to change Google’s auto-complete options following a search of the words ‘autistic people should…’ (Heasley, 2013). They wrote and campaigned to expedite the cessation of damaging and inaccurate advertising campaigns relating to autism (Kras, 2009) (McDaid, 2009).

Autistic people writing and connecting have instigated changes that impact on other autistic people by challenging current autism awareness campaigns (Durbin-Westby, 2012). They have clamoured for a greater say in organisations that claim to speak on their behalf, gaining roles such as National Councillor of the NAS (Arnold, 2002) and in the USA, council membership of the National Council on Disability (NCD, n.d.).

The increasing body of autistic writing is also having an escalating impact on autism research. Breakey (2006) writes that ‘autistic people have been viewed as contributing useful “insights” and “experiences” into the academic arena, but they have not been sufficiently recognized in the intellectual discussions and exploration of the condition’ but that this is changing as more autistic people speak out. She says that only autistic people themselves can understand what it is to be autistic and that researchers would make more gains if they stopped focusing on the ‘outside of the condition’ (the behaviour) and instead ‘focussed on what autistic people are’.

The vast majority of autism research focuses on neurobiology, environmental effects, potential causation and genetics. According to Singh et al. (2009) basic science research accounts for 65% of grants funded in the US from 1997 to 2006, clinical research for 15% and translational research for the remaining 20%. A very small fraction of studies focussed on epidemiology or family function and services available to autistic people. Singh et al. counted 308 new, publically-funded autism projects between 2002 and 2006, only 9 of which looked at family and services.

However when the opinions of autistic people are sought, they say they want research to focus on improving their outcomes and quality of life. Silberman (2012) asked some autistic writers their views on ‘what could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults’. One respondent, Paula C. Durbin-Westby, said that ‘Research priorities and dollars should refocus on communication needs’ and Ari Ne’eman said:

Research and science have always played a large role in disability policymaking, in large part due to a history of disability being viewed mainly as a public health issue. But while science can tell us much about how the world is, it falls to values to tell us how the world should be. When assessing the quality of different forms of service-provision, we should think about both efficacy and ethics.’

AASPIRE (Academic Autistic Spectrum Partnership in Research and Education, 2013) is a community-based participatory research partnership composed of health services and disability researchers, autistic self-advocates, health care providers, disability service professionals and family members. It was formed to challenge the:

misalignment between [autism] researchers’ priorities and those of the autistic community; a lack of inclusion of autistic individuals in the research process; use of demeaning or derogatory language and concepts; threats to study validity derived from miscommunication between researchers and participants; and the use of findings to advance agendas that opposed community values.’
(Nicolaidis et al., 2011)

Autistic people by writing and sharing their ideas are influencing the direction of autism research in other ways too. Autistic person Michelle Dawson was asked to join an autism research group after impressing principal investigator Laurent Mottron with her interest in the science and detailed knowledge of the literature (Mottron, 2011). Mottron explains that Dawson ‘has helped the research team question many of our assumptions about and approaches to autism — including the perception that it is always a problem to be solved.’

Donnellan et al. (2013) quote several autistic authors in their paper challenging the definition of autism as a triad of impairments (Wing and Gould, 1979) and call for increased recognition of the neurologically-based sensory and movement differences autistic people experience:

Any view of autism at this time needs to reflect the experience of self-advocates with autism and others who describe sensory and movement differences, as well as the latest in the neuroscience and child development literature. We need a research agenda that focuses on understanding and supporting autistic people and others in more respectful, personalized, and successful ways.’

Autistic writers are increasingly likely to critique research studies, especially those of interest to the mainstream media. This was demonstrated after a paper was published recently describing people who had been diagnosed with autism as children but who lost their diagnoses as they grew up (Fein et al., 2013). The study authors label these as an ‘optimal outcomes’ defined such ‘that the individual be without any significant autism symptoms and function within the normal intellectual range; however, other difficulties, such as weaknesses in executive functioning or vulnerability to anxiety and depression may still exist.’

Media reports presented this as a people ‘recovering from’ or ‘growing out of autism’ and autistic people took issue with the definition of optimal lives as being those without autism. Dawson (2009) wrote (on presentation of Fein’s data at a conference):

Dr Fein and her colleagues have determined the criteria for optimal outcomes in autism, and these criteria assume that autistics who remain autistic are suboptimal. Remaining autistic is an undesired, unsatisfactory, inferior, suboptimal result.’

Many researchers make value judgements about autistic people’s lives that do not correspond with how they themselves describe their experiences. It seems plausible that if more academics were to study the ever-growing body of literature created by autistic writers, there would be fewer misunderstandings and more progress on improving lives and outcomes. Even a slight shift in the priorities and funding of autism research away from causation and possible prevention of autism onto finding more effective ways to educate and support autistic people throughout the course of their lives, would lead to outcomes that could be described as truly optimal.

The increasing body of literature from autistic people willing to share their experiences will have a positive impact on service providers who base their practise on the best available evidence in supporting autistic people. In their writing autistic people promote the social model of disability and personalised approaches to support services, which influences policy and legislation and hence impacts on service providers.

Valuing People (Department of Health, 2001), a UK government White Paper on learning disability, makes proposals based on four key principles: civil rights, independence, choice and inclusion, all ideas promoted by autistic authors. The Independent Review of Autism Services in Northern Ireland (Maginnis, 2008) proposed that each Health Trust develop ASD Family Support services within their ASD specialist teams to provide ‘person centred’ advice and support to children/families and autistic individuals. Person-centred planning is based on social model principles of inclusion advocated by autistic writers.

Autistic people have been consulted at all stages of the development of the Draft Northern Ireland Autism Strategy (DHSSPS, 2012) (open to public consultation until early March 2013) and were among the membership of the Project Board established to manage and direct the development of the Strategy and Action Plan. The vision of the Autism Strategy corresponds with that in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2008) and includes participation, inclusion, respect for difference, equality of opportunity and accessibility.

The Northern Ireland Autism Adult Care Pathway (RASDN, 2012) advocates a person centred approach in which:

intervention, care and support –as well as the diagnostic process - will take into account individuals’ needs and preferences. Individuals with autism should have the opportunity to make informed decisions about their care and identified support needs, in partnership with their healthcare professionals.’                                                                   

RASDN acknowledge that their Care Pathway cannot be fully implemented without significant investment and there are financial deficits within HSC Trusts. They intend to reconfigure service provision to better support autistic adults and say they will ‘endeavour to secure new resources where possible.’ Autistic people and their allies have lead the way in changing policy from a medical or charity based model to one of rights, participation, respect and equality and they will continue to work to ensure funding is in place to allow people to access appropriate services to make this vision a reality.

Autistic writers have challenged providers of support and services directly on how they can most effectively work with autistic clients. Lawson (2012) emphasises the importance of communication among all the agencies involved in working with an autistic individual. But as autism involves problems with communication, service providers do not always involve the autistic person when deciding what is best for them. She explains that these barriers can be overcome by using communicative technology. Finally Lawson asks that agencies encourage their staff to read and explore autism from the perspective of autistic people.

Autistic people have written about their experiences with providers of services. Many of them have shared their desire to be listened to, to have their concerns acknowledged and to be treated as individuals. They have discussed the labels often used by professionals to categorise people. ‘I Am Joe's Functioning Label’ (Harp, 2008) is a blog post eloquently demonstrating the challenges and needs that can be overlooked when a person is labelled as ‘high functioning’. In ‘Just Me’ (Sequenzia, 2012) the author describes how she can be thought of as ‘high’ or ‘low’ functioning depending on circumstances. She writes, ‘Functioning boxes are not definitions of who we are. They are simply a very narrow view of our complexities.’

These autistic writers ask that service providers and others interacting with them, avoid either minimising their talents or denying their very real impairments.

Amanda Baggs is an autistic woman with multiple chronic medical conditions who communicates via an AAC device. She is a talented and prolific writer who has covered many aspects of autism and disability such as ethics, representation and communication. She has written about the times she spent in institutions and the abuses she suffered and witnessed there. She has also written about personal care services she received in her home and the staff who provided these, detailing individual and systemic failings in her care. She describes the many ways in which support staff have used their position of privilege and power over her and others to perpetrate different types of abuse, from threatening to withdraw necessary services, infantilising adults, making decisions without consulting the person in receipt of services, disrespecting bodily autonomy and privacy to physical intimidation (Baggs, 2012). Baggs lives in the USA but the comments on her blog posts from readers all over the world attest to the universality of her experiences.

Agencies and staff members who read these accounts of how it feels to be an autistic person receiving services are likely to have a greater insight as to how they can impact on a person’s life and to have more understanding of how to use the power they hold as care providers, in ways that are respectful and enabling.

One of the most crucial services any person requires is adequate and appropriate healthcare. According to Article 25 of the UNCRPD (2008), ‘States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.’ Accordingly, autistic people should receive the medical care they require just like anyone else.

However, as recently as March 2013, Amanda Baggs has faced intense and sustained pressure from members of her medical team to eschew the life-saving treatment she required (Cohen-Rottenberg, 2013). Amanda wrote about these incidents on her personal blog and her story was quickly shared by people in the online autistic community, many of whom contacted the hospital to seek assurances that she would receive appropriate medical care. She has since had the necessary treatment but many other autistic people without her outreach face similar discrimination in healthcare services. This incident demonstrates how crucial autistic writers are in highlighting these situations and how much progression is still needed before autistic people are treated as equals.

As the diagnostic criteria for autism have been widened and more people are diagnosed with the condition and with the near ubiquity of the internet, there has in recent years been a surge in the numbers of autistic people writing about their lives. The body of literature these people create continues to grow each year and the scope of its influence increases correspondingly. Without this writing we would know far less about many aspects of life as an autistic person. Other autistic people would not have the sense of community and belonging these writings have provided. Many of the achievements the writers have worked for would have been forfeited. Autism researchers and service providers in particular still have much to learn from the writings of autistic people.

As the dominant narrative shifts from the impact of autism on parents to those who are the real experts on the autistic experience, the focus will shift into greater acceptance, understanding and ways to support and enable autistic people. Autistic peoples’ writings will continue to transform and impact on all those in the autism community.

References


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18 Apr 2015

Yes to Marriage Equality

I've just written about our wedding on April 9 and described what a beautiful and perfect day it was. I had married before, 19 years ago. It was an unhappy marriage that I tried for many years to fix before coming to accept, with the support of many people around me and the help of Women's Aid, that staying married would destroy my life and likely those of my children. The separation happened four years ago and the horrendous task of divorcing took a few years more.

I am forever grateful to the people who helped the children and me through that time. I am indebted to all those who over the years, campaigned to change the definition of marriage and make divorce legal. They ensured that children receive the protections they deserve and their efforts meant that I could be free from a terrible situation and, as a person who'd had to stop paid work to mind the children, was not left destitute.

For years after the separation I was a single mother of three. For one of those years, my sister lived with us and for all of them, all members of my family and our friends, have been there for us providing practical and emotional support when we needed it. We never stopped being a family even though we did not fit the proscribed model of a nuclear family. I've often heard campaigners against equal marriage bang on about how children deserve a mother and a father. What children need, as I have discovered, is to be free from abusive situations and to have access to people around them who love them and on whom they can rely. The precise set-up is not important.

I had never expected to find love, yet in July 2012 I met a man who I am now married to. He and I are perfect for each other; as I said on our wedding day, his weirdnesses and mine match! It was important for us as a couple to marry. We wanted to make our union legally binding, to demonstrate to the children that we are both there for them for the long haul. We wanted a party and a chance to show our friends and family just how much we mean to each other. We wanted to be husband and wife.

Everyone is entitled to arrange their relationships in whatever way works best for them. My relationship is no better than that of my friends who opted not to marry. I don't think that anyone needs to marry to be committed to their partner. Many people oppose the institution of marriage for perfectly valid reasons. But what all people deserve is to have that choice. I have heard the reasons people have given for opposing equal marriage and none stand up to scrutiny. There is no reason why marriage need be between a man and a women only.

The joy we had on being able to marry, the ability to make that decision is something all people ought in a civilised and caring society to share. The only reason why anyone would deny that to other couple is because they think those relationships are less important and that is an opinion based on bigotry. Our children are listening, we need to let them know that they are all valued and that we oppose the dreadful bigotry that LGBT folk of my generation endured growing up. We need to end this ridiculous inequality in all corners of Ireland and let them ALL grow up with the choice to marry or not marry as they see fit.



Our Wedding

Thursday April 9th was the best and happiest day of my life so far. My three children, our closest friends and beloved family members gathered with me and the man I love, to witness our marriage. We had the ceremony in Belfast City Hall with a registrar who did everything she could to make it special and personal while also accommodating Ryan's needs. We and the children walked in together and Ryan read out his own words:
"I am happy today because my mum and Micheál are getting married. That is great and loving and wonderful.
Micheál is my friend. He is funny and sometimes silly. We go to Tesco and he buys me the right cookies and DVDs. I like taking him to the cinema.
My mum is beautiful and kind. We go to the Transport Museum and W5 and the funfair.
Our family will always be friends and love will win the day."

By Neil Arthurs Photography


We exchanged our vows including some we'd written ourselves:
In all the world, there is no heart for me like yours.
In all the world, there is no love for you like mine.
I promise to be your sidekick and your best friend, to keep laughing with you, to mind you when you need it and lean on you when I need it.
(To love these 3 children as I officially become your partner in their lives)
To share all my joys and sorrows with you,
To love and support you through sunshine and rain for the rest of my days. 
By Neil Arthurs Photography

My two boys in the photo above are dealing with events in their own way; Michael, like every other man in my family, was in bits crying and Ryan was perfectly at ease listening to his music.

I had been able to find a poem to read out, The Present by Michael Donaghy, that expresses beautifully what this means to me and which fits with both my nerdy and sentimental sides:
For the present there is just one moon,
though every level pond gives back another.
But the bright disc shining in the black lagoon,
perceived by astrophysicist and lover,
is milliseconds old. And even that light’s
seven minutes older than its source.
And the stars we think we see on moonless nights
are long extinguished. And, of course,
this very moment, as you read this line,
is literally gone before you know it.
Forget the here-and-now. We have no time
but this device of wantonness and wit.
Make me this present then: your hand in mine,
and we’ll live out our lives in it.
And Michéal read The Sailor's Vow by Alan Jenkins:
The life I spent so lavishly
Before we met
Seems one long night, in memory,
Of sea-fever and sea-fret –
Which led me here, to you, to this:
Our haven below decks.
You anchor me, I you, with a kiss
(Though the coast is strewn with wrecks).
Official documents were signed and we were officially and legally married and it was time to celebrate.

By Neil Arthurs Photography


Everyone was gorgeous and looks beautiful in the photos.
Our reception was in the Harlem Cafe Belfast just round the corner from City Hall so we just walked over and enjoyed a few glasses of prosecco to get the party started. And boy did we party.
Photo by Red Mum 

Before we had our meal, Micheál and I, his uncle and my dad all gave short speeches. Dad told everyone how Micheál had brought happiness to our home. I managed to gulp-weep just twice and since I usually cry st the least wee emotional boost, that was pretty good going. When we'd finished, my daughter Tara stood up and in her very own way, said how much she and the boys love us both and are so happy to see us marry.

The food was gorgeous and plentiful, the staff were fantastically friendly and helpful, and everyone I spoke to said it was the best wedding meal they'd ever had. Then the music kicked in and shoes were kicked off as my gang and his took to the floor to see who had the best moves- the Dubs or the Nordies. There were no winners, but what we lacked in grace and ability we made up for in joyful exuberance! And what made my heart sing was how obvious it was that all our guests were having a fantastic time. Best of all though, was how delighted my three children were with the marriage and the day itself. We had prepared a chill-out zone for Ryan and had plans in place to take him away early if the crowd and noise became too much for him. But he was in his element hanging out with his cousins, yapping and dancing. At one stage he was even swinging around to the Pogues with Micheál's aunties! No one could have predicted that.

It was a day filled with love, laughter, music, wine and good food. We were floating on the wave of warm feelings and enthusiasm from all around us, both our guests and from people who couldn't be there but sent messages filled with love and kind wishes. People got to see why we wanted to marry, to understand how Micheál, me and the kids are family. It was the most perfect day imaginable and if I'm ever stressed or low in the years to come, I will close my eyes and recall the moment when I was serenaded by 3 Smiths to this and all will be brighter.

(I've written a follow up post on why everyone should be able to have their day.)

3 Mar 2015

Never Say Never

In Saturday's Guardian was an short piece called "What I'm really thinking: the grandmother of an autistic child" in which a woman describes an outing with her 7 year old grandson Jimmy. Obviously we need to have some insight into the difficulties this causes her because that's the standard narrative for any and all articles on autism which centre on a family member and not autistic people themselves. So Grandma describes how "the red-faced Jimmy who is almost out of control" is "screaming and lunging violently at the locked doors" of some public toilets.

Later when Jimmy has settled Grandma discloses that she "like[s] to imagine" that they look normal and admits that few of her friends know that she has an autistic grandson in case they offer what she describes as "well-meaning but inappropriate advice" such as a book recommendation by an autistic author. "It breaks my heart because I know that Jimmy, even with the best help in the world, will never be able to read or write or lead a “normal” life."

I have not bothered to comment on a Guardian article for a few years but I wanted to reach out to this woman. I swallowed my distaste for the assumptions and probably unexamined attitudes regarding disabled lives and the potential to learn and develop. So doing my best to be considerate and temperate, I left a comment:
"If your friend's advice is to read books by autistic authors, then it is both well meaning and appropriate. Also, you cannot possibly know that Jimmy, aged only 7, will never be able to read or what kind of life he will lead. Your love and the time you spend with him coupled with good education and natural progression will help him live up to his potential. Take heart!" 
The most helpful thing to me in knowing how best to help my son has been listening to people who know what it's like to be autistic. Dismissing advice to read autistic writers is to my mind, ill-considered. Also it bothers me to read comments of the "my child will never" variety and we've all seen them numerous times in autism discussions. Sparrow Rose Jones wrote about the damage such statements can do:
"So . . . what is it that you are actually saying when you look at my life and say that I am not like your child? In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change."
My autistic son will be 15 this year. I can't possibly list all the skills and knowledge he has amassed since he was 7 and like all of us, he will continue to learn and progress throughout his life.

(A couple of detractors took issue with my comment, but they showed so little insight and understanding that their views are beneath my regard.)

1 Mar 2015

Assembly Manual for Autism Articles

I haven't seen one of these for a while- a newspaper article on a parent's view of autism that adheres rigorously to the the template I wrote in 2008. Today offering is titled Autism and ABA: 'My beautiful, fun little boy was slipping away from me'. In this we learn how wealthy, beautiful and accomplished Tanja Gullestrup uses tough-love therapy to "stop her losing [her three year old son] to this isolating condition".



So here's Step 1-4 of the Autism Article TM Template (Step 5 is optional and refers to vaccination-bashing autism articles) :

1: Baby is born
2: Everyone rejoices
3: Baby grows
4: Mum realises baby is somehow different, something is not quite right,


And lo! the template it doth predict the story most accurately as we learn that the "usually smiley and playful" child "wasn't making eye contact with anyone and didn't appear to be taking in anything going on around him. It was like someone had flicked a switch in his head" and he "had begun to withdraw into his own, self-contained universe".

Step 6: Mum struggles to get anyone to take her concerns seriously. Her husband might think she's worrying about nothing and that no child of his could possibly be anything less than perfect. All the doctors she encounters are callous and all the other professionals are harsh and unhelpful. Eventually one special therapist or teacher (but not a medic) comes along who understands and for the first time, really listens.

Step 7: After much effort and heartache, Mum is devastated to learn that the explanation for all the child's problems is this terrible curse known as Autism.

The NHS would fail him:
" Left in the hands of the NHS, she points out, Konstantin would so far have had little more than speech and music therapy, ‘neither of which would be giving him the skills that he needs to survive and have a life of dignity. Children on the autistic spectrum need to be taught how to fit into society, and the real cruelty comes from neglecting to do that.’"
My autistic son has never had any form of ABA(TM) and yet he is living a life of dignity. Nor is it cruel to ask that society accepts neurological diversity. 
And here comes the devastation: 
"a developmental paediatrician confirmed what she had not wanted to admit, even silently to herself – her son was indeed on the autistic spectrum. ‘I felt as though my heart was being ripped out,’ Tanja recalls. ‘My mother was with me, thank goodness, and as we left the hospital, I was physically sick. I am a fighter by nature but in those darkest hours I definitely became unhinged.'"
Step 8: Just so we know how hard their lives are, how terrible this Autism thing is, several examples of the child's terrible behaviour are described, the tantrums and self-harm, the strange humming and abnormal interest in trains. This makes the book "gritty" and "unflinching" in the newspaper book reviews and is generally thought of as a good thing.

This child is so very young that Step 9 detailing tales of violence is missing but his strange otherworldly behaviours are outlined:
"his speech regressed and he no longer responded readily to his name", and "in the weeks leading up to [the child's] diagnosis he had begun to walk on tiptoe and repeatedly pull his hair. He also opened and closed doors incessantly and became obsessed by pushing buttons on electronic toys."

Someone cure that child stat!

Step 10: The warrior phase commences. Mum finds out stuff the doctors don't know, or didn't want her to know. She arms herself with superior knowledge, garnered from a motley crew of brave mavericks or comes up with some self directed plan, and goes medieval on the autism.

Step 11: Mum is a lone crusader, challenging authority and staying strong and calm in the face of what to ordinary mortals would be insurmountable obstacles. But Mum reveals the real terror she felt, the depression and anxiety, the tears and sleepless nights, all due to the autism which has seized her child and holds him or her hostage.

"[Mum's] quiet confidence is centred on the conviction that, while there is no ‘cure’ for autism, she is providing the next best thing for Konstantin – a radical, tough-love therapy known as Applied Behaviour Analysis (ABA)." 

"However as she began to seek help, Tanja also realised that she was facing an uphill struggle. In the US, ABA is tried and tested – successive studies have shown that half of children given full-time ABA tuition early enough start school  and many need no further therapy at all. The other half make significant progress, too, reducing their need for special needs support. ABA is endorsed by the American Medical Association and in the majority of US states health insurance companies are mandated to cover ABA therapy. But in the UK, the National Institute for Health and Care Excellence has yet to provide ABA as an option for the treatment of autism. Its official line is that it cannot recommend ABA because a review has found no evidence to support it."
It is true that NICE, after a thorough investigation of the claims and the actual evidence decided not to recommend ABA. But another claim in this paragraph needs to be countered: there is NO evidence whatsoever that 50% of children who receive early and intense ABA ever become "indistinguishable from their peers" (whatever that means). That is an utter fabrication based on a poorly written study from way back in *1987* which combined 40 hours of intense therapy with harsh punishments. Do ethics matter? As I have written before, why are standards so very low when it comes to autism?

And another point to make, when lauding Lovaas as a pioneer, bear in mind that he first trialled his ABA as a gay/trans conversion therapy.


Step 12: The intervention phase commences. The child gets older and matures, hopefully with lots of love and good education as well. But the intervention is credited with effecting a miraculous cure.

Step 13: The story ends by recalling just how far they have all come and how it would never have been possible without x,y or z (ABA, the companionship of a Golden Retriever or certain biomedical treatments). The child is said to be normal or recovered, as measured by a place in the Valhalla of this type of autism parent - mainstream school.

So this child, aged just three years old, is undergoing seven hours of ABA tuition, five days a week. Instead of calling social services the Daily Mail asks that we donate to her charity so that yet more little autistic kids will be subjected to the same. "‘He is using every ounce of his brain to do the work and, by the end of the day, he is exhausted,’ says Tanja."
I do not admire or condone this.

But lets see how if the template still holds:


"'...the transformation has been astounding.’ Before starting ABA, Konstantin had become so unsettled, he was incapable of sitting still to eat, read or watch TV. ‘If you took a toy away from him, he’d scream for an hour, and when he woke at night, he howled the house down,’ says Tanja. ‘Within a week of starting therapy, he was making eye contact and engaging again, and within a couple of weeks he was toilet trained, which I had begun to think would never happen.’ Eighteen months on, he is content and compliant and plays happily with his sister"
The child is only three years old! How much of this can be attributed to ABA and how much to natural progression? My son is 14 and can do all sorts of things he couldn't manage when he was 2! Also, I strongly oppose any treatment that has "compliance" as a goal. Too many disabled people have suffered as a consequence of early compliance training.

I have decided though that my template though needs another step:

Step 14: pay now or pay later!

This step is exemplified in the following horrible paragraph:
"ABA is undeniably expensive. A full programme, whether carried out at home or in one of the handful of ABA schools in the UK, requires intensive teaching for up to 40 hours a week, 49 weeks of the year, and costs £45,000 annually, ‘which sounds a lot, but it is less than the £150,000 to £200,000 a year costs of residential care for young autistic adults once they become too big and aggressive to live at home,’ Tanja points out. (A recent study by the London School of Economics and Political Science estimated that autism costs Britain £32 billion a year, more than heart disease, strokes and cancer combined – making it the nation’s costliest medical condition.)"
"Too big and aggressive to live at home"! What a revolting statement. This sort of argument is particularly galling. There will be a high cost to provide appropriate lifetime support structures for some autistic people, and so what? Early ABA for all will not change that. People are entitled to the help they need as citizens whether they have a disability or not. The UN Convention on the Rights of Persons with Disabilities points of the problems of  "putting a price tag on the basic human rights for a significant segment of the population".
Furthermore, "it is actually good economics to ensure that disabled persons are able to live up to their potential. When there are no obstacles in their way, disabled persons are employees, entrepreneurs, consumers and taxpayers, along with everybody else."

The article ends:
"For Tanja, life may no longer be whimsical and carefree, but it has resounding purpose. ‘I believe there is a reason why Konstantin was given to me,’ she says. ‘He is the most sweet-natured and loving boy and he is living proof of what can be achieved. If he can deal with the challenges of autism, then so can I. So every day, we carry on and we count our blessings.’"
Life has purpose for all of us. Being mother of a disabled kid makes you no more special or worthy than anyone else. I count my blessings everyday too. I just wish that the sort of autism-mum story exemplified by this article would no longer be given a platform. It's beyond time to amplify the voices of the real autism experts, the people who are themselves autistic.