December Tiger Haul

Ah yes, my final Tiger indulgence of the year. Or so I tell myself. Last year, I bought every single Christmas present there, making up hampers to suit each individual. That was so much fun. But this year, I’m going to buy exclusively from Charity shops. (Yes, each year my Christmas present buying follows a strict theme. Though the years of homemade stuff need more energy and planning than I currently have)

Anyway, here’s my non-Christmassy Tiger haul from today:
[clockwise from top left: a bag of pretzels, a Fibre optic lamp, a sewing kit in a tin, a tape dispenser including a variety of tapes, glow-in-the-dark frogs, colouring pencils in a tin (for my new bullet journal in January), pack of AA batteries, pack of AAA batteries, a green watch, a pink watch.]

The lamps are for my daughter, who has a huge collection of fairy lights and disco lamps in her bedroom. Though, really, they are also for me! Nothing beats lying in her bed, with the darkness all lit up by her many lights! 

[image shows the fibre optic lamp on a small round armchair-side table, switched on so the fibre optics light up with a pink glow. Beside it is the glitter lava lamp, which works more like a snow globe with a light in it, it is very much smaller than a standard lava lamp and does not heat up as much. The light in the lamp is blue in the photo. However, it does change colours, from blue to white to green to orange and to red. ]


So, again a rather small haul this month. I’m trying to be a bit more discerning in what I buy. Though, if I had my way I’d buy every single item in the shop! 

Autism research: who’s it really for?

Note: I’m not going to provide links to any specific studies I may mention. Mainly because I had written this blog post earlier today and internet issues resulted in it being deleted, and I’m much too tired to dig out the studies again. I just want to write it out again as quickly as possible, while I still remember it! If you really want to read the original studies, I know you all know how to use Google!

Opponents of autistic self-advocates often claim that we are anti-research. As usual, the truth is much more nuanced than that.  I have not come across any autistics who are demanding a blanket ban on all autism research. There are, however, specific types of research that seem problematic to us, and that we believe are a waste of money. Broadly, these are:

A: Pointing out the obvious. 

A recent (2016?) study showed that non-autistic people lack an ‘autistic Theory of Mind’. So, just as we can’t really ‘walk in their shoes’, they can’t walk in ours either. Autistic people have have been saying this for years. There are many other examples of studies like this. It gets frustrating that it takes studies carried out by non-autistic ‘experts’ to prove what autistic people have been saying, like their voices count above our own. 

B: We are not mice! (Or dogs, or monkeys or other animal studies)

Every few weeks a new ‘breakthrough’ study seems to be released claiming to have something to do with autism. Unfortunately, a lot of these have been conducted on mice. They take mice, alter them in some way, and then try to claim the ‘autism-like’ behaviours studied have any relevance to autistic people. Getting a mouse to hide in the corner of its cage, obsessively grooming, for example, is not autism. Yes, animal models can be useful in finding treatments for actual medical conditions. But they do not do much for studying different neurotypes. We cannot ask the mouse what it’s thinking or feeling. And selecting a few ‘odd’ behaviours as a proxy for autism is just plain bad research. 

C: You want to do WHAT to us?!!!

This category of research includes all those studies that try to turn us non-autistic. Leaving aside all the ‘quack’ therapies that don’t bother doing any research, there are still a lot that fall into this category. A few examples are Transdermal Magnetic Stimulation, Electroconvulsive Therapy, oxytocin sprays and all sorts of other pills and potions. Aside from the risks of side effects, aside from the ethical issues surrounding consent if children are involved, there are often concerns that rather than helping autistic people, these therapies are more concerned with making them act non-autistic. And I’m not even going to go into genetic research that aims to prevent us even being born. 

So, what kinds of research do I actually approve of? 

Any research aimed at treating the real life disabilities faced by autistic people trying to cope in a non-autistic world. Research into assistive technology that might help us communicate better. Research into co-occurring conditions such as epilepsy, migraines, Ehlers-Danlos Syndrome, chronic pain, anxiety and depression. Research that actually helps us live fully as autistic individuals, not try to turn us into non-autistics or eliminate us. 

But, more than that, when I look at the money that goes into problematic research, paid for both by Governments and charities, I can’t help but think of all the autistic people living in poverty. I would much rather that money be spent on services for them such as respite, home help, support workers. Ideally I’d like a grant made available to someone upon diagnosis, to use as they will, whether that be for supports, for rent, or for buying food. And a grant available for those who cannot access diagnosis in the first place. Every day I come across autistics resorting to personal fundraisers, such as Go Fund Me, just to survive. And so, I’d like actually helping autistic people be more of a priority than the majority of research, which at present seem to mainly benefit ‘autism researchers’. 
[image of a 3D clay-model type depiction of a person, entirely in white and unclothed, holding a giant magnifying glass with a black handle. The magnifying glass is aimed at a large red 3D question mark.]

Self-diagnosis vs ‘armchair diagnosis’, self-disclosure vs ‘outing’.

As anyone who has read my blog ought to know, I’m a firm believer that self-diagnosis is valid. By this, I don’t mean folks who claim to be autistic, (or any other self-diagnosis) because they want a ‘get out of jail free card’ without having more than a basic understanding of autism. I mean those that have studied the criteria, read accounts by other autistics, and spoken to friends and family to confirm that the way they think they behave is consistent with how others see them behave. In some ways, I find it can be more valid than an official diagnosis, because you alone know your innermost thoughts, and what’s going on in your mind. A lot of self-diagnosed autistics find that the more they delve into the world of autism, the more they come to grips with who they are. It can be a long journey of self-discovery. 

This is a very far cry from ‘armchair diagnosis’. This is the habit a lot of people seem to have, where they assign a ‘diagnosis’ to a person, without having met them and spoken to them, in fact usually without knowing too much about them at all. Even so-called ‘experts’ find this hard to resist, especially when it comes to posthumous ‘diagnosis’. For an example of this, you need look no further than the first chapter of Steve Silberman’s Neurotribes. Yes, I’m sure he researched it extensively, but I still don’t believe it can truly be valid. 

Earlier this week, Rosie O’Donnell tweeted a link to a video purporting to show ‘proof’ that Donald Trump’s youngest son, Barron, is autistic. I’m not sure it does that, as it’s a highly edited video that shows behaviour that could be explained by a whole host of conditions, or even plain boredom or tiredness. There is absolutely no way of knowing what’s going on in someone’s mind by merely observing a few snapshots from it. And, as has been shown in numerous studies on bias, people will see what they want to see. So, some people, including Rosie, saw ‘signs of autism’, while others saw ‘a spoilt brat’. Both sets of people may be right, equally both sets may be wrong. ‘Armchair’ diagnosis is plain wrong. It can also be dangerous, especially when the ‘diagnosed’ person is a child. Children have been, and continue to be, murdered simply for being autistic. 
Rosie would have you believe that she ‘outed’ Barron Trump because ‘there’s no shame in Autism’. But, there are autistics who do feel shame in their neurology, and don’t want anyone to know. This is their prerogative. Some make public that they may be autistic, but face such a backlash that they then withdraw the claim, as happened to Seinfeld. I believe disclosure should be a personal choice, and if someone hasn’t made the choice to declare publicly that they are autistic, I believe we should respect that choice. And that we should certainly ignore rumours and speculation about them. For example, on an autism course I attended, the speaker put out there, as an example of a role model for autistic girls, the ‘fact’ that Helena Bonham Carter is autistic. Yet, I have not found a single statement by her that confirms this. The same is true about the footballer Messi. These people may well be autistic, but if they have reasons not to disclose the fact, then we should respect them. 

Some people are ‘outed’ and rise to the occasion. A strong example of this is when Olympic gymnast Simone Biles was ‘outed’ to using medication to treat her ADHD. She proudly proclaimed that she had nothing to be ashamed of, and became a hero to many people for doing so. But not everyone is able to do this, and just because a celebrity has a condition does not mean they should be forced to become a ‘poster boy’ for it. 

Recently, tv presenter Chris Packham disclosed his autism diagnosis. I suspect the timing was influenced by the need to promote his memoirs, which no doubt mention the fact. Whether or not he would have publicly disclosed his diagnosis otherwise, I really can’t say. And while I greatly admire his courage and openness for publicly joining the autistic community, I would not admire him any less had he not done so.

When my children were diagnosed as autistic, I asked their permission becfore disclosing that fact to their teachers and doctors. I have made it clear that it is entirely up to them when, and if, they tell anyone else. They chose to tell their grandmothers and one set of neighbours, who have all sworn confidentiality, and no one else. 

If people truly want respect for autistic people, then they should respect their choice in these things. ‘Armchair’ diagnosis and ‘outing’ shows a complete lack of respect. No matter what Rosie thinks. 
[image shows a cartoon drawing of an old fashioned brown armchair, with a white background.]