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What you want always wanted to know about autism but were afraid to ask

16/5/2015

9 Comments

 
On the May bank holiday I had offered to run a one-hour introduction to “Ordinary autism” at Limmud, a conference “dedicated to Jewish learning in all its variety.”   I thought it would be interesting as I have often felt that some of my cultural traits as a Jew overlap with my autistic traits, to the point where it is difficult (and maybe unnecessary) to know which is which.

Like autistics, Jews tend to like debate and aren’t afraid to challenge the “teacher” so this session included robust discussion, and many points arose that I label SAQ’s (Sometimes Asked Questions) and UIQ’s (Unintentionally Insulting Questions).  For all those (perhaps non-Jewish, non-autistic people) who might also have such questions but are too shy to ask, I will answer them here.  If you disagree with my answers I would be happy to hear why and discuss further in the comments below.

How can you compare autism to Judaism; they are completely different?

Yes, they are completely different  though they are both integral parts of my identity.  If someone insults Jews generally, they are insulting me whether they intend to or not. If someone insults autistics generally they are insulting me whether or not that is their intention.  If someone says “You don’t look Jewish” they often seem to think this will be considered a personal compliment rather than a generic insult.  If someone expresses surprise that I am autistic, that is not a compliment either; rather it is a demonstration of ignorance about autism.

I tell people who query my choice to be open about my autism ("it's not necessary"), or just tell me how “awful” autism is (you might be surprised that even a long term friend has felt free to do this) that if they heard such remarks about Jews they would be outraged at the anti-Semitism.
When explaining how helpful I think it would be to autistic people and society generally if attitudes to autism changed,  I often quote the cultural change that has occurred in my lifetime about homosexuality which used to be illegal, whereas now it is illegal to discriminate against someone on the basis of their sexuality.

How could you compare autism to homosexuality, autism is a condition that can cause major problems in daily life and homosexuality is just a particular preference in regard to sexual and life partners?


I don’t say that homosexuality and autism are the same, but  I am saying that there are parallels  in regard to some ways the two groups are treated in our culture.  I make the comparison between autism and homosexuality not because I see any particular similarity between the two but because, while the incidence of homosexuality has remained stable over my lifetime, the attitudes to it have changed radically – this is what I would like to see in relation to autism.  
Autism, like homosexuality, is a naturally occurring neurological disposition.  There are advantages to the population as a whole to have some people who think differently; that is how we progress.  Medicalising the condition is not necessary and is only helpful to individuals if a medical certificate is required to access appropriate support or acceptance of their condition.

Surely diagnosis is a good idea because that is how you get the support you need.

Yes, in the current context it is helpful for some people to get a diagnosis because there are gatekeepers to the support system and to get past these gatekeepers you need a diagnosis.  However that does not mean that the system makes sense and that an official diagnosis has any more meaning or veracity than self-diagnosis. You can see that diagnosis is not based on objective criteria when experts like Simon Baron Cohen suggest that “If the term is used too loosely, it can lose its meaning as a medical diagnostic term. I think it should be reserved for people who are suffering, because that's when you get the diagnosis. When the features of autism are interfering with your life to such an extent that you're suffering, and you're seeking help and you take yourself off to a clinic and get a diagnosis, that's the only time when the term should be used”

Surely it is good that people who are mildly affected don’t get a diagnosis because then they are considered normal and are part of normal life.

The point here is not who should get a diagnosis but whether autism is actually part of “normal” human diversity or not.  I would argue strongly that it is – that autistic people are part of “normal” - we just are the outliers and are atypical in various ways. If we want a well-functioning society we need to be inclusive of various diverse groups - the Equalities Act enshrines this principle in law. There is a great video online of
Nick Walker, Autistic educator, martial artist and mindfulness meditation practitioner putting the case for autism as part of neurodiversity.
I would also repeat something I read on twitter “Mild autism does not mean that I experience autism mildly. Mild autism means you experience my autism mildly”. It can be very disabling to have to behave like everyone else just to be accepted as “part of normal life”, especially when the special talents of extraordinary autistic people have so much to offer society generally.


9 Comments
Imkw
25/5/2015 05:09:48 am

A fascinating post, Caroline. As it happens, on a superficial level, I had sometimes thought about the parallels between Judaism and autism, as the characteristic movements of (ultra) orthodox Jews in prayer or while studying the talmud seem so distinctly autistic. But indeed, the culture of debate, with students allowed to challenge the teacher etc., really suggests that similarities might go deeper than that. Also, funnily, late 19th- and early 20th-century stereotypes about Jews as being "too bookish", learned but not practical, bad in PE etc., sound like a description of someone with autism. Well, I'm sure Jews are not any more likely to be autistic than the general population, but maybe this reflects a culture that has a tradition of valuing learning for its own sake, independent from economic outcomes (although of course, this is also very gendered). On another level, though, I've also often thought that Buddhism relates to a autism in interesting ways (e. g. in terms of the value of attention to detail).

As for the question of self-diagnosis, I completely agree. All too often, getting an official diagnosis is a matter of luck, or rather, a matter of having access to the right places/ institutions/ support systems. Indeed autism is a "soft" diagnosis, with no objective criteria - ultimately, much can depend on how the specialists views you, in medical/psychological, but also in moral terms. In my experience, most people with a self-diagnosis have read extensively about autism, and have also gone into deep soul-searching, and re-evaluated their whole biography. *Very* few (if any, really) are just self-deluded and keen on being autistic. Thus, imho, a self-diagnosis should be regarded with respect, although, if possible, I would always recommend getting an official diagnosis, as it may make things easier.

And yeah, "Mild autism does not mean that I experience autism mildly. Mild autism means you experience my autism mildly" - so true.

Reply
David
25/5/2015 07:01:07 am

I wish i had known before April 3rd 2015, 95 odd days after my 65th birthday, that i was on the autism spectrum. I have had a series of dramatic and terrible events which occurred solely because of my autism, as a result i have been through several terrible experiences at intervals from childhood through to the present day. Had i known I was autistic, i think my life would have been completely different. I think politicians have a lot to answer for that they are not offering a screening program to older adults ( or anyone educated pre 2000, ) in the same way they offer various cancer screening projects. Are they so different, well no, not if you have suffered unnecessarily. HFA as I probably am, are able to adapt once informed. I am however, in 100% agreement, that ASD should be treated in any other way than an acceptance of being another way the brain is wired. The issue to my mind, is no different from votes for women in the 19th Century, and the abolition of racial discrimination in the 20th century. Autists should be recognised for the contribution they can make to society, from the greats like Steve Jobs, to common people like me!! I am not a disorder, nor am I disabled, I don't wish to be diagnosed, I want to be identified.

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Imke
25/5/2015 08:08:02 am

Yeah, I also wish I had known earlier, rather than finding out a few years after having finished my PhD, at a point when, in many ways, I had reached a "dead end". Indeed, it's a shame that there is no proper support for autistic adults. Often, awareness alone (even if you choose not to share it) would help a lot, just because it might mean you don't keep asking yourself why, despite your supposed intelligence, so many things are so hard, and you keep running into difficulties. Just knowing *why* you're different, and knowing your issues are real, that they don't mean you're weak, or just not trying hard enough, would help so much! A screening would indeed be a good idea, and it's also crucial to raise awareness about autism in adults.

And true, I also see autism as a difference, not necessarily as a disability. In many ways, it can be used to illustrate the social model of disability, in fact, as for autistics, it really is society that can be disabling, not their condition in itself. Thus, being "identified" rather than "diagnosed" would indeed be appropriate.

Caroline Hearst link
26/5/2015 06:41:12 am

Thanks for sharing David, I hope that despite being diagnosed even later than me (I was in my fifties) you find that the identification of autism is as helpful in your life as it has been in mine!

I absolutely agree that identification and recognition of autism rather than diagnosis, is the crucial factor that has the power to transform our experience of life.

Caroline Hearst link
26/5/2015 06:45:51 am

Thanks for your comments Imke, it is interesting that the parallels you see with Judaism are different from the ones I saw.

Similarly with Buddhism, I don't see an overlap as such, but I have found Buddhist ideas and meditation extremely helpful in my own life, and I think the ability to tolerate difficult feelings which meditation teaches can be especially helpful for autistic people.

Reply
Imke
26/5/2015 07:21:49 am

With Buddhism, the main overlap I see is with the attention to detail, the value attributed to just concentrating on watching one drop of water or such. But I completely agree, meditation, but also many Buddhist lessons, such as learning to let go, learning to accept change, to embrace the moment etc., can be very helpful for autistics.

Joseph
30/5/2015 01:23:27 pm

Your post looks good. I don't really profoundly disagree with anything on that post, but I think I will add a few points to it.

1: I believe what breaks down prejudice towards minority groups is the ability to relate to the other person. For example you'd get someone who's attitude is "I don't like immigrants they should all go home"...except for Janusz down the pub, he's a good laugh, or Martina from the shop around the corner, she's nice and friendly. I think these cumulative experiences are what break down prejudice, rather than anything top down. It's meeting people and realising that they have emotions and can communicate with you that makes them human.

Autistic people have a disadvantage compared other minorities in that we cannot relate to other people, or communicate with them socially, which means barriers would be harder to overcome.

I also believe that prejudice towards ethnic and sexual minorities are learned, whereas prejudice towards people on the autism spectrum are more instinctive and innate, It's harder work not to be discriminatory towards an autistic person rather than another minority.

2: Jewish, ethnic and sexual minorities are very clear in their messages towards wider society. It basically boils down to, "Yes, we're different, but there is nothing wrong with this, we're not worse or inferior to you, so accept us". With the Autistic community, it's a lot less clear cut. The majority believe it is a disability like cerebral palsy that needs to be cured or overcome. A very small minority believe it a natural difference, like being gay, and a larger minority (including me and you) believe it is somewhere in-between. But there are differences of opinion over where to draw the line and everybody has their own subjective definitions. over what is a difference and what is a disability. As we have learnt from the results of the past election, people respond better to simple ideas over complex ones. When someone asks me "what is autism" I can't give a straight-simple answer, in absence of a coherent counter-narrative, people will just fall back on the default "poor, poor disabled person" or "pull yourself together you weirdo".

3: I do wonder how many pathological traits that are seen as symptoms of autism are actually due to trauma/minority stress. Since virtually everybody on the autism spectrum experiences this, it would be interesting to see if there is a study of this.

4: A lot of people from minorities seem to work under the assumption that society will constantly become more prosperous, and people will constantly become more and more tolerant as time goes on. This is not the case, societies can become very atavistic, and go backwards. The Jewish people clearly learnt this the hard way. I think that any minority group should take into account that society can go off backwards, and need to ensure that their position does not also revert when this happens.

5: The autistic community is very scattered, and in the vast majority of situations, we are a minority of one. It is easier to dismiss and discriminate against a minority of one than it is against a minority community, which is why we should be a lot less atomised.

Joseph

Caroline Hearst link
30/5/2015 11:46:55 pm

Thanks for your interesting comments Joseph, I would like to respond to some of them and will follow your lead and use numbers to show what I am responding to;
1.I agree with most of your first point except the idea that prejudice against autistic people are more instinctive and innate. I think that the tendency to indentify with a particular group and take against those who are not part of the group could well be inate, what varies is the who is considered part of the “in” group and to what degree cultures and individuals decide to use their brains to override this impulse.
In regard to autistic people there are both incorrect myths about autism (such as that we lack empathy) and the result of autistic difficulty tuning in to cultural norms, which can upset others.

2..I am not sure there is a solid line between disability and difference. My take is that autism is a difference which can also be (but is not necessarily) a disability. I think with the last election a more important issue was that the Tory narrative was not effectively challenged, not that it was simpler than the alternative, just that there was no alternative articulated.

3. I agree with your point about some apparently autistic traits being not inherent but caused by the stress autistic people are under. To me, though, that is a bit of a chicken and egg debate.

5. I agree that autistic community is currently in its infancy and is something we need to pro-actively build for the future, so that young autistic people have role models and all ages have a sense of belonging to a community they can take a pride in. I think Autscape is doing a great job of this, and also ARGH in Scotland - it is something I hope upcoming Autistic Pride events AutAngel will also nurture in a different way.

Reply
Imke
1/6/2015 04:07:52 am

What an interesting discussion! I don't have the time for a longer comment, but I largely agree with both your posts. To me, the fact that for autism, there is indeed no solid line between disability and difference is a key issue and a reason why fighting for "autistic rights" will always be difficult. We're a minority, yes, but on the one hand, for some aspects of our differences, indeed we just need more acceptance and tolerance, but on the other hand, there are also fields in which we do indeed need support, such as a suitable working environment.

Also, for many of us, the particular individual pattern of strenths and difficulties is not only unique, but seems really unusual and often contradictory, with supposedly "easy", straightforward tasks being really difficult (if not impossible), and vice versa. Unfortunately, I assume that for many people, this will always be difficult to understand and accept. It's way harder than accepting or appreciating someone who is "different" in sexuality, religion, culture, lifestyle etc., or someone with an obvious and clear-cult disabilty. Even more so as many autistic people seem really "normal" at first sight, and, particularly if they're smart, but socially awkward, it's all too easy (and tempting) to explain their issues in moral terms.

And yes, I agree, society will not necessarily continue to become more prosperous, open and tolerant. In fact, we do already have fewer "niches" for nonconformist people than a few decades ago, and arguably, while more open on the surface, Western societies, in many ways, have also become less inclusive - which is exactly the reason why "high functioning" autism has become socially relevant as a diagnosis.

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