There is no el in my alphabet It is understood I must endure The torture of festivities But please… For me The glitter glints a razors edge Shamming glamour. And In the clamour of Christmas I panic. Peace! I plead, Release me from the joy! Let me be that solitary tree That falls in the forest Silent. Unencumbered. Not bedecked With blinking, twinkling tawdry. Spare me from the frenzied hell of Yule, Its slurred, blurred fur tonged vat of overload Fuelled by prosecco, turkey fat and pud Spiced by abandonment of boundaries. Dear Santa, lend me your sleigh to Fly away. Behind my rictus smile I’m dying here. Longing for the bleakly clean and grey of Boxing Day.
Sleep. 'Sleep that knits up the ravell'd sleeve of care, The death of each day's life, sore labour's bath, Balm of hurt minds, great nature's second course, Chief nourisher in life's feast,' Macbeth. Act 2. Sc2
Shakespeare understood the value of sleep in refreshing and replenishing mind and body. ‘Nourishing’ is a good word as, like food, it is essential to health and ultimately, to life.
For me, poor sleep has a day to day impact on my quality of life. A particularly bad night leads a 'bad autism day'. These are days when my balance is poor, where sensory issues have a more extreme effect than usual and where I can only tolerate other people for a limited time before my stress levels rocket and I’m desperate to go home. Concentration becomes difficult and I cannot manage day to day jobs, because the effort is too much. These are the days when I cannot control overeating.
I fear diabetes, stroke and heart disease, so I go to the gym and do my best to keep fit. However, like anyone else would, I find it difficult to lead the life I am capable of, in a state of exhaustion.
Autistic people read the papers, so we know that sleep deprivation is a major risk factor for dementia, which adds to our anxiety. I wonder to what extent it also affects 'mind fog' and poor time and task management, vestibular problems, etc? Being exhausted all the time tends to affect neurotypical functioning but for us, these same symptoms are regarded as 'autism deficits' and of course, our every gene must be endlessly sought out and manipulated. The way blindingly obvious connections are so assiduously avoided would be farcical, if it weren't for the debilitating effects on our quality of life.
So good sleep is valued by everyone and it’s easy to access information on sleep hygiene. If that doesn’t work, health and research professionals examine, research and advise on a myriad of problems that might disturb sleep. From snoring, sleep apnoea, insomnia, sleep deprivation, and restless legs syndrome, there are drugs, devices and gadgets. It’s an industry. Unless you are an autistic adult. As with so many vital health issues, autism and sleep simply hasn’t been a ‘thing’ in research terms.
Of course, there's plenty of research concerning neurotypical adults, but I haven't seen any papers on autistic adults. I've seen some papers that indicate there's a statistically recognisable problem, but only as part of a bundle of statistics.
Even back in Shakespeare’s time, sleep was known to be a problem based in the brain and affecting the function of the body. But what everybody knows is that the autistic brain is wired differently. So what works for the neurotypical mind may not work for the autistic one. Or perhaps it would? Who knows? It’s a mystery.
Because there's no specific research, the NHS will not allow GPs to prescribe Circadin (melatonin) to any adults aged under 55 years. After that, some health authority areas allow a child dose for 3 - 13 weeks, 'to restore circadian rhythms'. Other commissioning groups won't even permit that. Or you might get benzodiazepines. For a few days, then you can return to normal insomnia. There is no other autism tested support. No gadgets. No therapies. No industry.
So - we need prevalence to be established and research into what therapies might be effective. The 'why' of it is surely relevant, but perhaps the better funded studies of younger people might inform that. Once we are adult and our poor sleep is an established problem, what we want is practical support to sleep. That’s my dream.
My Presentation to the United Nations, 17th Session of the Committee on the Rights of Persons with Disabilities, on 4.04.2017
Thank you for inviting me to speak to you about ageing and autism. It is rare that issues relating to ageing are addressed, because so little is known about the impact of autism on the mental and physical health of older autistic people. At present in the UK, there is no cohesive record keeping or any national database of autistic adults. This has effectively “hidden” ageing autistic adults. It is known that 1.1% of the population is likely to be autistic and assumed that this includes people of all ages. Proper prevalence data would provide the demographic evidence of ageing autistic adults and social research could then raise awareness about our specific needs. The few research papers and projects claiming to include adults rarely includes people aged over 40 years old, so approximately half of the autistic population is excluded. This is in violation of Article 31 of the Convention: Statistics and data collection.
I am emphasising this as the lack of such information leads to poor planning and commissioning, effectively excluding autistic age-appropriate provision. Research gathers the evidence to inform health and social support policies and practises and without it, ageing autistic people are not receiving equality on many levels, but this inequality itself is going unrecorded. This inevitably leads to the UK being in violation of Article 33: National implementation and monitoring; as it is impossible to monitor implementation of the Convention regarding ageing autistic people, when it has not collected statistical evidence about us or researched our situation apropos our rights under the Convention. This also implies a violation of Article 35: Reports by States Parties. A state cannot report authentically if it has not gathered evidence.
My main purpose for attending this meeting is to discuss how violations under the Convention may be contributing to early death in autism. A report was published recently in the UK, titled “Personal tragedies, public crisis: the urgent need for a national response to early death in autism”. This is very pertinent to the work of this Committee, as it highlights failures which can be linked to the Convention for the rights of persons with disabilities. This report concludes that autistic people die on average 16 years earlier than in the general population and this figure rises to more than 30 years earlier than average, for autistic people with learning disabilities. If it can be shown that violations of the Convention contribute to these appalling statistics, I would argue that the UK is in violation of Article 10: The Right to life; in respect of ageing autistic people. My argument is that by failing us in so many areas, the UK is not taking “all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”
Compared with the general population, autistic people with learning disabilities are 40 times more likely to die prematurely due to a neurological condition, with epilepsy being the leading cause. Epilepsy is known to affect between 20 and 40% of autistic people with learning disabilities; and its prevalence rises with age. In the general population, the rate is only about one percent. The trajectory over the lifespan also differs to that of non-autistic people. Research to date indicates that the underlying triggers in epilepsy might be different in autism. Yet despite knowing this, there has been virtually no research to establish whether treatments for epilepsy are safe or affective for autistic people. This is a violation of Article 25: Health, in that autistic people do not receive the highest attainable standard of health, without discrimination on the basis of disability. The present treatments for epilepsy have been tried and tested for the general population, but not in respect of autistic people; and that is reflected in the far higher levels of mortality.
The rate of suicide amongst autistic adults with no learning disability is nine times higher than in the general population. I am going to consider suicide and mental health together, as I believe similar violations of the Convention may contribute to poor quality of life and suicidal thoughts due to poor mental health.
Several studies have suggested that between 30 and 50% of autistic people have considered dying by suicide. A study of adults with Asperger’s syndrome found that a third of participants had planned or attempted suicide. The actual suicide rate amongst autistic people is nine times that of the general population: it is the third most common cause of premature death in autistic people. This statistic is far higher than for people with psychosis, yet suicide in the latter group has been extensively studied. This indicates a violation under Article 25, as autistic people do not receive appropriate identification or early intervention of their healthcare needs, in respect of mental health and suicidal thoughts.
When diagnosed in adulthood, as many ageing autistic people are, most receive no further assessment of medical or social needs, as laid out in Article 26: Habilitation and rehabilitation, part 1, section a. Yet a high proportion of autistic adults have additional, diagnosed mental health conditions, such as depression and anxiety. These conditions are known to worsen in older age, in the non-autistic population, but this has not been studied in autistic older people. Mental and physical health conditions and social needs may change over time; and although adults with learning disabilities may receive regular assessments, there is no such requirement for autistic adults. Studies also indicate that the majority of mental health services are not sufficiently skilled to meet the needs of autistic adults with mental health problems, including suicidal thoughts. This is a violation of Article 26, part 2.
Anxiety is one of the major risk factors for the development of depression and has also been identified as a major risk factor for suicidality in its own right. Autism is associated with a heightened prevalence of anxiety, at around fifty percent, compared with ten percent in the general population. Anxiety is associated with the prevalence of a range of physical comorbidities, including heart disease, which is the second highest cause of early death in autistic people. It can also be a factor in hypertension, angina, asthma and a range of other conditions. Yet once again, there is shockingly very little research in this area, where ageing autistic people are concerned. This is discriminatory, as it is known that the presence of anxiety in autistic people can reduce help seeking behaviours for physical health problems, thus reducing timely access to healthcare and therefore potentially increasing morbidity. Another violation of Article 25; and of Article 26. There is a complete failure of health and social services provision geared towards the communication with and specific care for ageing and elderly autistic adults. To the best of my enquiries, such services simply do not exist and there are no plans to initiate any. This is in contravention of Article 25, part d.
Many ageing autistic people are on multiple medications for mental and physical health conditions, leading to long term side effects which also go uncounted and un-researched, another violation of Article 31 of the Convention: Statistics and data collection.
I am involved as an autistic consultant, on the Ageing in Autism research programme at Newcastle University. This is one of the first programmes anywhere in the world, studying autism and ageing. Of the 576 autistic people so far involved in the project, over 70% reported that they had attempted to access services, of whom, nearly 40% did not access the service they needed. Reasons included lack of available services and lack of referral. Where ageing people are concerned, our right to Article 28: Adequate standard of living and social protection, is compromised by the lack of autism awareness in elder care services.
For those needing care at home, unless we can afford private services, we receive care from professionals with little or no autism awareness. This can cause severe problems, as difficulties in social communication, touch and other sensory differences, may lead to misunderstanding and mistreatment. Ageing autistic people in need of residential care enter homes where there is similar lack of understanding of their needs, or appropriate provision. Therefore, under Article 28, access to public housing programmes may be available, but the conditions of living in that housing may cause distress and lead to a decline in mental and emotional wellbeing. This is a contravention, but I believe it is due to a lack of knowledge, leading to lack of provision, rather than an act of deliberate discrimination, so refer you back to Articles 31 and 25.
I believe The UK will be reviewed by this Committee during the session in August/September. In doing so, I would urge you to make specific reference to the rights of ageing autistic people. Autism is largely a hidden disability, but where ageing autistic people are concerned, our existence is comprehensively ignored by the State, to the detriment of our health and wellbeing. As we have rights as persons with disabilities, I would ask you to hold the United Kingdom accountable for the violations I have detailed.
Autism research: stuck on youth. 28.07.2016
In what other area is there such a focus on the young and such a comprehensive abandonment of the old, than in autism research?
I'm prompted to write, after a recent call for autistic women to participate in a research project. As usual, "women" translated into "women under 40 years old". I asked why and the researcher in question outlined the need to set parameters to her research, as all researchers must, in order to get focused outcomes. I understand this, but wonder why the parameters always include the young and exclude middle and older aged autistic people?
I always, as a matter of course, challenge projects that have a cut off age, because I campaign for the inclusion of older autistic people in any debate or research of autistic life. It is not just so that my experience is included, but because all autistic people over 40 years old are almost always excluded from any research or age appropriate autism service designs that might lead to improving our lives.
If most people live to 80 years, that means half a lifetime is deemed scientifically irrelevant, which leads to half the lifetime of autistic people being unsupported by autism trained professionals. Because without the research, there can be no evidenced guidance for training. We know we are being ignored and it doesn't feel just. It feels as though we are used by science when we are young, then discarded.
Age brings flux, as supportive parents die, as friends retire and move away, as children leave home and home becomes harder to manage. It can bring retirement, illness, death of spouses and friends, loneliness and isolation. It can also bring changes for the better. But who knows? Nobody - because the academic community is talking the talk but not walking the walk - they aren't challenging funders to fund or producing papers that will lead to improvements in support. Which is why I do what I do.
How is autism defined by the travel insurance sector? 17.01.2016
When planning a holiday and trying to get quotes from various travel insurance companies, I always tell the salesperson that I am autistic, as this is a disability and must be declared. They then tell me I am obliged to answer yes or no to their scripted questions, none of which appear to include autism. Does this mean I do or do not need to declare my autism? I can be penalised for getting it wrong, but none are able to tell me how they categorise autism. This is a call to the travel insurance industry to please educate yourselves about developmental conditions, so you can provide a proper service to your one in a hundred autistic customers.
The problem with costing autism. 23.09.2015
It is likely that more than one in a hundred people across the sweep of history, across all of humanity, could be called autistic. But suddenly, in the Western world, researchers are portraying us as an economic menace, to be carried by the taxpayer. Or else what? They leave “solutions” up to the imagination, which in my opinion is a breathtaking feat of moral cowardice.
Studies of the economics of autism are a horror fest. I keep reading about how each autistic person will cost hundreds of thousands of pounds to the taxpayer. Autism costs will eat whole economies – nations will surely buckle under the load. Really, we ought not to be allowed. Autism Speaks has spoken and there are funders putting their money where its mouth is.
The statistics are cost analyses. They are not cost-benefit analyses. They cost outgoings but they do not have the data to cost benefits as autism benefits have largely been invisible: only those in need of support access the services that provide data. Has anyone ever considered how autistic skills add to the economy? How autistic innovators, scientists, engineers and artists contribute to the profit margins? Quantified the output of conscientious workers who don’t stop to chat?
Autistic people are more than one in a hundred of all humanity. Sometimes with state funded support, quite often without it, some are finding their places in society and there are efforts being made to understand and embrace the most able amongst us. But there are some who are less able, who need support to fulfil their potential. And others, who will always need high levels of support and who will never contribute to the arts, science or industry. Achieving a healthy quality of life throughout adulthood appears to be a spectrum about which little is known and almost no research is planned.
Autism it is a constellation that has no barriers of race or wealth, religion or power. Across the globe, many millions of autistic people work, pay their taxes, get married, procreate and nobody is counting them, because they are not diagnosed or, like many of us, they have a diagnosis but are not counted because they do not draw upon the services costed by the statisticians. Some autistic people will need lifelong help, as will a multitude of other, non-autistic people, for all sorts of reasons.
So please can we stop the hysteria? It feeds fear and validates hatred and it helps nobody.
One difference stood out to me as requiring guidance. The majority of autistic people and their families prefer the term “autistic person” whilst professionals prefer “person with autism.” So I asked the authors via Twitter, “If professionals prefer people with autism and we prefer autistic people, who defers to whom when we talk to each other?” The NAS responded, “Neither defers, this research is about ensuring language is owned by the whole autism community.”
The attitude of the NAS is that everyone is entitled to use the terms they wish. I agree that all autistic people and their families must have this right. The problem arises when it comes to professionals. In the 21st century, they are not isolated in an ivory tower. They move among us. The NAS answer is a cop out because it fails to answer the very specific question. If no-one defers, what happens in practice if the professional asserts their entitlement to “own the language”?
I am autistic and to call me anything else is wrong. To do so knowingly is offensive. My autism is integral to being me. If I can be called a person with autism, then how come I cannot be a person without autism? Must I fight the battle to be described accurately, every time I interact with a professional? Every social worker, academic, carer, clinician, police officer? Again and again and again? Because I work in the autism field and I would need to go through this every day, several times. That is what the NAS advice would require me and every other autistic person to do.
What ever happened to “reasonable adjustments” – are professionals exempt? How about the basic courtesy of calling a person what they want to be called?
When I stand on a conference platform, as I do sometimes, am I an autistic professional, or a professional with autism? If the audience are professionals, must I respect their preference and speak about autistic people as “people with autism”, even though the term is wholly wrong to this autistic? If a delegate asks me a question, for the benefit of the group, what term will satisfy the preferences of everyone?
Since I’m on a rant now, what is to happen in printed material? If a professional writes a report, do they assume it will only be read by other professionals? Is there a belief that we autistic people will not be professionals, or that we will not read what they write about us? Should we write in and complain, every time a professional asserts their right to trump our majority wish? How does the NAS advise on the matter of this discourtesy? Because after this survey, it cannot be claimed that professionals do not know what we want.
I wait with a horrible fascination, to read the NAS website tying itself into an almighty knot, as it attempts to adjust. It has begun already. The homepage tagline now reads “We are the leading UK charity for people on the autism spectrum (including Asperger syndrome) and their families. We provide information, support and pioneering services, and campaign for a better world for people with autism.” Priceless.
I know that when they looked at the research findings, the NAS wanted to please everyone. So their guidance is inclusive and liberal. Or else it is ineffective and unworkable. Or else it sanctions disrespect and promotes confusion. I wonder which language will be owned by “the whole autism community”?
In the dynamics between autistic people and autism professionals (professionals in autism?) the NAS attitude to guidance begs the question, are they here for us or are we here for them? All I can say is that if professionals didn’t exist, we would still be autistic but if we weren’t autistic, autism professionals would not exist.