Why the National Autistic Society should hang its head in shame 29th October 2018
So here's a thing:
Over the past week or so, lots of freelance autistic professionals have taken to Twitter to assert our right to be paid for our work, when we speak at National Autistic Society conferences. Because in nearly every instance, we are not paid.
And here's The National Autistic Society, in response, scrambling out what they call a 'policy' on paying us, which is about as weaselly as can be found, still urging us to work free .
It says: The majority of speakers are in employment and so we don’t pay them a fee. When we do need to pay speakers – for instance if they are freelancers – the fees will vary depending on the person’s usual fee, and on the subject and budget for the event and the experience of the speaker.
We are deeply grateful when our speakers choose not to be paid, because they feel our events give them an opportunity to share their work or experiences with our delegates.
We cover all our speakers’ travel and accommodation expenses where required.
This is not a policy. This is a page that offers autistic freelancers the chance to show our gratitude for the opportunity of standing in front of an audience of paid professionals. BIG SMILE. Or demanding we take money that has been earmarked for supporting autistic people. BOO, HISS.
Hang on a second! 'But we are autistic people' we say. 'If we are working at your profit making conference, then pay us.' It's not a straight no, if we insist on being paid (Although all I have ever had is a straight no). The NAS has decided that we freelance professionals, with our lived experience, our professional training and years of work, must submit to the judges and jury of the NAS. They will decide what payment we get, if at all. And that will depend on their priorities, not the work they have required of us. This ‘policy’ applies solely to freelance speakers.
Who is expected to donate their wages to supporting the work of the NAS?
Do highly paid NAS Directors donate their wages to the NAS?
Are keynote speakers asked to donate their wages to the NAS?
Are externally paid speakers asked to donate their day of pay to the NAS?
No. Yet all of these people are stakeholders in autism. Our condition contributes to their livelihood.
How does the NAS do transparency?
After over 60 years of existence, the NAS is still avoiding creating structured pay rates for freelance autistic conference speakers. This information cannot be found on their website.
This is how they get conference speakers:
They start by inviting employed professionals, who want to disseminate information as part of their job, or for career enhancement. There’s nothing wrong with that.
Then they ask NAS employees to speak. They are on the NAS payroll, of course, so their preparation and attendance are already paid for.
Keynote speakers, as well as autistic comedians and performers are unique crowd pleasers, who attract paying delegates. They are offered a fee – often quite high. They are worth the investment.
They ask freelance autistic speakers for presentations. We may be experts in our field and unique for our ‘insider’ autistic perspective. Or they may want us to talk about out lives and experiences. But they do not offer us a fee.
The NAS wants us on their conference programme. But they really, really resist paying us.
Why is it different for freelance speakers?
I don't know. Maybe our autistic perspective is not valued by the National Autistic Society? Maybe we are not considered worth the investment?
So how does the shiny new 'policy' work, in practice?
Autistic people must literally contact the conference organisers and ask to be paid. Then we must negotiate, based on no set rate & no info about what others have been paid. Not being offered payment demonstrates the assumption is that freelance autistic people will work unpaid, so the NAS can support its paid staff; and any services they don't charge for.
Have we ever asked for change? After all, the NAS has been going for over 60 years now
In 2015, a group of autistic professionals wrote to the Strategic Management Group (The NAS Directors) to ask for a structured pay policy. Four of us were invited to attend a meeting, where the Directors, each one on a salary in excess of £60,000 per year, told us ‘no’ to our faces. After which, nothing changed, until the barrage of complaints on social media over recent weeks. Suddenly, the page of praise for volunteers appeared, with its grudging reference to paying, 'When we do need to pay speakers…' ' No promise to pay for the average 2 days of preparation and one day attendance - no indication of a rate - any rate at all. £20 voucher, anyone? So no actual change then, unless autistic people force the issue and negotiate. The NAS know better than most, how difficult this would be for most autistic people. Note: I have not used the word 'cynical' at all.
So what do I think should happen next?
In my opinion, the default offer should be:
Here's our rate for the job. You can negotiate up, as other speakers do, but not down.
Followed by: If you'd like to opt out of payment, would you like your fee equivalent to be
A) a gift of vouchers, of equal value?
B) A thank you gift of your choice, to the value of the set rate.
C) A donation, of equal value, to support the charity of your choice?
The NAS requires money to support its work. Its work is to support autistic people. The people it refuses to pay a fair rate to, is autistic people.
So here’s another thing: Who is the NAS for?
Disclaimer I worked as a Project Manager from 2011-13, leading two NAS autism & ageing projects, winners of The Axcis Award for Outstanding Adult Services 2014. Having successfully completed both projects, I left for a freelance career. I have not applied for a NAS job since. I have presented at many NAS conferences, some of which are listed here. Latterly, I asked for, and was refused, payment for these. I have no intention of working for the NAS in any capacity ever again, so have nothing to gain from this blog, other than expressing my outrage at what I regard as exploitation of autistic freelancers.
Why I hate ABA: a personal opinion 17th May 2018
ABA (Applied Behavioural Analysis) as a discipline, requires autistic children to appear as if they are typical children. It doesn't matter how kind and well meaning the teacher, whether they are autistic or not, a loving parent or not - the outcome is that the 'successful' autistic child ceases the behaviour that defines them as autistic. They never stop being autistic.
Once you realise that they never stop being autistic, it becomes clear that they are suppressing their natural responses. It is masking, or 'camouflaging'. Asking a child to mask all of the time causes a build up of stress. Stress is both mentally and physically damaging. When that child grows up, they are likely to exhibit the mental and physical effects of their stress. Autistic people are not born depressed or anxious - yet most of us acquire these conditions as we grow up. We suffer the physical manifestations of a life of stress; obesity, diabetes, gut problems, heart problems, self harm: the suicide rate of autistic people is nine times that of the general population. Try to link cause and effect.
The other horror of ABA is that, by training the child to obey instructions that run contrary to their instinct, you are, deliberately -for the purpose of ABA, but by default in other areas of their lives - teaching autistic children that they cannot act on instinct, but must obey the nice authority voice. You are raising vulnerable children to be prey to every predator with a nice authority voice. Would you do that to a child of yours? Or trust a clinician or therapist to do it? I don't think so.
That is why this autistic adult hates ABA.
Most autistic children without intellectual disabilities grow up, learning from the world around them, just as other children do. We learn to cope, to trust ourselves and to find a way through. We may need more help in our early years, while we struggle to 'learn' the world'. We may need adjustments for the whole of our lives, for some things, but that's OK - you don't expect blind people to navigate without aids, do you? Adjustments are made for all sorts of disabilities.
Many of us will tell you that a major disabling factor for autistic people is the ignorance or intolerance of others. Communication works both ways, yet it is us who are expected to adjust, all the time. Environments that suit us will suit others too - autistic people aren't the only ones who find noise, crowds, smells, bright lights, etc; difficult. ABA training to adapt doesn't in any way help us adapt - it forces us not to complain about the routine sensory punishment beatings we take because we are autistic and society is inflexible in its attitude.
ABA does not teach children to be typical. It teaches children to act normal, all the while inhibiting them from finding their own 'normal'. Rather than training us, we want those who would change us to examine their own motives, because ABA is not beneficial to autistic people. ABA absolves worried parents who live in an intolerant society, from having to accept the reality of who we are. And it makes an awfully big profit for those who live off providing it.
These past few days have been intense, full of contact and as I am beginning to realise, quite emotional. The frantic rush, crush and push of people was the most difficult practical part of getting through the conference as it happened. Noise, light and movement were all clattered together in a sensory kaleidoscope, where I was one of the tumbling pieces, forever trying to identify a pattern, but finding it constantly changing and re-forming.
I knew it would be shocking, but the degree to which the language negated us was overwhelming. Amongst many researchers, it was the casual talk of deficit, of risk, the othering of classification: we were children with autism, males or females with autism. We were people with autism and their interest was in the autism, not the people. I’ve heard farmers speak of their cattle with more respect for individuality.
When this, the majority spoke, there was little or no mention of our talents, our abilities were pathologized to the extent that they became unrelated to aptitude, achievement, hard work or self-determination. Our passions translated into ‘special interests’, to be weaponised as treats for good behaviour or withheld as punishment. There was a complete disregard for hobbies as a source of joy, calm, contentment, or a pathway to success in adulthood.
Success was credited to those who could deconstruct us at a molecular level, manipulate our genes, control our responses and otherwise manipulate us into passing as ‘normal’ or ‘typical’. Even as Sarah Cassidy, in another room, was providing frightening statistics linking suicide and self harm to camouflaging.
The emotional response to being gratuitously othered by so many was insidious and cumulative in its impact. By concentrating on ‘getting through the moment’, I did my usual compartmentalisation trick. My inability to survive without doing this, necessitated a more subtle sort of camouflage - my feelings went into shutdown. When this happens, I present a public persona devoid of obvious friendliness, making me seem quite forbidding (so I’m told) and distracted. It means that even if people like what I say, they rarely warm to me as a person. This creates a grief that has no outlet and which contributes to my social isolation. My feelings went into a very deep hole at INSAR, so I got through. Right up until I was waiting in Departures at Schipol. The rest is private.
On the rather marvellous side…
Participatory research is a key to the science craved by many autistic people. As my fellow autistic Discover Podcast reporter, Jon Adams remarked, ‘That’s all we want - not to take over but a seat at the table’. If we can’t inform research, all the researchers will be doing is informing each other. As I’m at my most polite, I’ll call that a sort of academic onanism. When autism spoke at INSAR, someone from Autism Speaks told one of us to be grateful to the parents who founded INSAR. I’m just grateful that they weren’t my parents.
I’m delighted that there were some outstanding exceptions, whose humanity gave me relief from the onslaught. It was noticeable that the majority of academics talking of the benefits of autistic participants, were British. Sue Fletcher-Watson and Jeremy Parr (both of whom I work with, in varying capacities) should take a bow for being leaders here, along with too many others to name. I was proud for them all. They are a vanguard and should be treasured.
Given the levels of autistic exclusion, it may surprise some, that Jon Spiers at Autistica, the awesome autism research charity who sent me to INSAR and insists that paid autistic participation is written into every research proposal, won the INSAR2018 Advocate Award, ‘for his continued dedication to autism research’. Who says Americans don’t get irony! They do realise it was ironic, surely?
Then there were the autistic friends from social media. We mutually support, we share anxieties and achievements, but we rarely meet. Suddenly, I was being introduced to people whose opinions and frailties I am familiar with, and who now mine. We discovered how we looked and sounded. I didn’t get enough time, physically or mentally, to make the most of this, but I gathered moments like stars, which I will remember every time I go online and see them shining in the Twittersphere.
I was working with the small and dedicated team from Autistica, all in it together to achieve common aims. They supported me and each other too. Special thank you to Rebecca Sterry, who did a fantastic job, taking care of everything I needed and editing our podcasts in between. I'm not sure she had time to sleep. The experience took me back years, to past careers; on tour with theatre companies or on location, making television programmes. Small teams working away from home tend to bond very quickly and quite intensely. Ending the trip was a wrench, but I was given the gift of being part of it for a while.
Pull it together now, Cos
To sum up, INSAR 2018 was a mix of hope and horror, fast friendships and some extremely loose ethics. I encountered what I regard as the best and the worst of autism research. I value the experience.
How have past experiences with medical professionals affected autistic adults future interactions with the medical profession? Twitter response
At 5.30pm on 3/5/2018, I Tweeted: After a recent conversation, I'm interested in hearing if #ActuallyAutistic adults past experiences when meeting medical professionals have affected your feelings about seeking medical help in future? I want to feed back responses to a research project (names removed). These are the answers I had received by 5.30 pm om 4/5/2018. None have been excluded and there are no edits.
Yep, I actively avoid most ‘autism professionals’ because experience tells me they won’t help much and will probably be talking pathologised bollocks.
Yes, both for myself and my children. Has so often been such a battle, I put off seeking medical assistance for myself and get v stressed if kids need it.
Health & mental illness become "special interest", because I was tired of being placated + medicated. Battles accessing support services still exist - usually escalated by MIND or health advocate to cut thru bureaucracy. "Most people never see psychiatrist"- no GPs don't refer
As a general rule, yes. Especially 'autism professionals.' I've had some pretty traumatic experiences with medical professionals who tried to 'help.'
Yup. After years of fighting for my MH & pain issues to be taken seriously, I now actively avoid seeing the GP. I pay privately for physio to help my pain & for counselling for my MH & post autism Dx support. It’s expensive but worth it as it means I’m not constantly exhausted. (Someone else responded: I think it’s the way to go x) She replied (I’m very glad that I can afford to. I realise I’m in a very privileged position to be able to do so.)
I have only seen a doctor, when - being ill, is making me cry - I get so very sick, of being negated! I need to, see a doctor - but I just can't - I really can't - no point!
Unsure if you include GP or just mean specialist medical people. If GP counts, I avoid: only go when I’m struggling to breathe or can barely move. GP always runs late (so my ‘day plan’ is out), tried to force me into physical examination, regularly seems to raise voice, confusing
I have basically written off any chance of "professional" assistance for the rest of my life. Prior experiences–multiple psychiatrists, psychologists, therapists, GPs, ENTs–were so staggeringly a waste of time and money. I cannot imagine a doctor actually engaging w/ my reality. It's not that no one tried. They did. But the training and education and, most importantly, human-based perspective, are just not there. I've come to see well-intentioned experts as one of the most dangerous groups in the world, bc they won't tell you when they don't know. If any single one of them had just come out and said, "I do not know what to do with you", I could at least have stopped wasting time. But no one did... they just gave me a half-assed dx based on their area of expertise and let me spin my wheels for 32 years. No real care at all. My best experiences were with talk therapists, because all they did was listen, try to meet me at face value without pathologizing every little thing, and occasionally offered CBT exercises or asked questions. They helped the most. One taught me to say "No".
I have been severely traumatized by past experiences to the point I now only go to a doctor if my immediate family forces me to.
Definitely & probably for the worse
Absolutely hate going. Will leave it a year or two then go with list... Always feel like a fraud despite some major illnesses.
i tell them upfront i'm #autistic. they pay attention to me. #actuallyautistic
It affects me very much, i have chronic illness & having to undergo operations being alone, not being listened 2 around anxiety & fear. I’ve let profs know i am autistic & its not been successful.
I've had a GP spend 45 minutes lecturing me about how everyone is on the spectrum and that everyone self diagnoses because of Google. I was pre-diagnosed and awaiting my final assessment. I knew more about autism than the person my employer paid to tell them how to accommodate me
My paediatric consultant told my GP that my daughter couldn’t be autistic because she can communicate well. He basically “pfft” at the idea when I suggested it. I was right. He was wrong. It’s put me off pursuing my own dx now, though. I don’t think I’ll be believed.
I avoid hospital consultants as much as possible despite being physically disabled. Hospitals, wards, clinics, and Gps bring me out in a cold sweat. a combination of finding these places overwhelming at a sensory level, but also the lack of understanding, adjustment around my autism
Yes, particularly as a woman with ASD, I’ve experienced a lot of sexism & ableism in medical care. For a couple of years I delayed any doctors or therapy. I only see woman doctors.
You better believe it. Negative experiences with previous doctors & therapists have kept me from seeking help for serious problems because the thought of dealing with them creates too much anxiety. Also I easily get overwhelmed by a lot of tests & medication changes & lose track. Also, we finally found a primary care we really like, who understands our particular issues and works with us to make things more manageable, and now due to an insurance change looks like we're either to going to have to pay her out of pocket or find someone else. Much anxiety!
Yes I hate it. GPs especially.
Please DM me if you want more answers. I was held down and forced by medical professionals at a young age. I have a vivid memory and am still terrified now, to the extent I may not have children to avoid forced exposure to medical professionals
I'm not sure they have for me personally, but the recent @AmasEdin survey on mental health showed up that this is a very common problem.
I haven't had too many problems with medical professionals. Maybe because I worked in Hospitals for years. Not sure. Sometimes I find the way some nurses speak to me as a patient in hospital a bit bossy. Most mean well though. Quiet spoken people make me less nervous.
I've pretty much stopped going unless I have to. I always feel rushed and can never seem to get them to understand my concerns (and why they ARE concerns). More often than not, I leave feeling stressed and belittled.
Yes. I put off going for as long as possible.
It's safer for me not to use any form of NHS mental health services any more. I have had to learn how to do things on my own. Like (X) I am very very lucky to be able to fund private therapy.
Yes! Only go if absolutely have to, think I have quite a lot of trauma associated with past visits
Yes...a lot still don’t ‘get it’
If I need to attend healthcare appt., I'm very anxious that I won't be believed & that I'll be thought of as a neurotic fake. When I've gone in with info b4 I've had GP raise eyebrows & smile & fob me off like I'm stupid or something. I always research b4hand u c & go prepared. Poor bedside manner still exists. Consultants can be the worst - little knowledge of autism (other than stereotypes) & as such very rude, patronising, & threatened if we are knowledgeable. I have experienced this most recently by A&E doctor. Believe its a generational issue.
I avoid engaging with medical care if at all possible. I’ve needed to go to my GP since October but I just can’t face it, it’s too stressful. I have a lot of backstory re the medical profession, but it’s too complicated for a tweet :/
Had traumatic brain injury years ago that left me w/frontal lobe issues. I looked ok so nobody paid any attention until I paid for a private neurologist. Invisible disabilities are generally not believed w/out independent evidence in my experience. Need to prove everything. :(
Yes absolutely! Very similar to many other comments. GPs, psychiatrists, psychologists, consultants, specialists, OTs. They ignore or disbelieve what I say and what I know. Therapists just get irritated by me. Thanks for asking!
Absolutely. I find it very difficult to put into words what the problem is, and usually end up having GPs rush me and think it’s something else entirely instead. I’ve had one or two who are patient but I avoid going now unless I have to, and get anxious when I do.
My GP makes it difficult for me to communicate with her. I'm not allowed to take in notes about what I want to say which when talking about my own stuff I often need. That has made it more difficult to get medical help & put me off seeing her. She also dismissed one of my concerns as 'just the way you experience hunger'
I was in A&E. I get extreme sensory overload and in particular noises of vomiting really distress me. Someone in the bed near me was vomiting really loudly and I had a meltdown because the noise was so painful to my ears. I also like to have the curtains closed and the nurses wouldn't allow me to even though the busyness of the ward was really getting to me. Then the doctor, because of the way I was communicating, wouldn't believe that I hadn't been taking illegal drugs. He treated me like dirt on his shoe. The effect of this has made me really reluctant to communicate fully with medical professionals out of fear of being mocked because isn't "standard" communication skills. I don't feel able to ever go to A&E again and I would only do so if I really had no choice. In the future though, now I know I am autistic, I would take some sensory aids with me and some written information for the nurses and doctors so they know what I need.
My HCP is SO ignorant of autistic characteristics that I'd almost rather see a doctor I've never seen before than go to my own. I expect to be mistreated by mine. She's not interested in even learning about it, let alone make true accommodations.
Not necessarily, every medical professional is deferent and I trust most people. I did lose trust however when a nurse bent a needle in my arm when taking blood - unrelated to autism.
A GP told me social skills are like tennis, I may never get to the level of "Federer or Nadal" but if I keep practicing I can get better...I was there for a different reason, at no point did I bring up my social skills.
Very much so, being female my period pains were always dismissed. It was only when they got to the point of being unable to speak/breathe that I realised how much of an issue they were.
Very similar experiences here being patronised, fobbed off, disbelieved, undiagnosed, misdiagnosed, treated differently when my husband was present etc., test results 'lost' or ignored. Definitely put off even though trying to manage serious long term health conditions.
This is a huge issue for #health #eds #autistic -Literal comprehension of language used by medical practitioners when we are not believed and trying to explain pain in one area. Work to be done
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.