The labelling issue, by a ‘mildly autistic’ ‘high-functioning’ ‘person with Asperger Syndrome’


If you had to describe yourself in one word, what would it be?

 

Don’t bother answering. It’s a stupid question and we all know it. (Although for the record, as a child I always used “indescribable”. Because I was a smartypants.)

Any kid who looks like this must be some kind of smartypants.

Any kid who looks like this must be some kind of smartypants.

But it’s surprising how quickly some people take the word “autistic” and apply it as a valid description of a child (or adult), with no extra words necessary. Some people are “autistic”, and apparently that’s all we need to know about them.

 

Of course, anyone who’s ever even known an autistic person (or ‘person with autism’, but there’ll be plenty of discussion on that later) will know that one word is never enough. And the other adjectives- like those in the title- often help a little but divide opinion a lot.

I suspect most people know this. But all the same, it’s surprising how venomous some people can be about the issue!

At time of writing, this is the most widely-seen post on Autistic Not Weird’s Facebook page. 45,000 people worldwide have seen it according to the stats, which demonstrates how sensitive an issue people find this.

At time of writing, this is the most widely-seen post on Autistic Not Weird’s Facebook page. 45,000 people worldwide have seen it according to the stats, which demonstrates how sensitive an issue people find this.

Personally, I try not to place too much importance on specific language. If I’m on a sinking ship, I won’t care whether I’m handed a ‘lifejacket’ or a ‘buoyancy aid’. I’d be slightly more interested in not drowning.

 

That said, adjectives/descriptors/labels (depending on your opinion) do seem to me like a necessary evil. There are as many different kinds of autism as there are autistic people, so we do need extra language to differentiate between them.

But when people rely on this extra language too much, we start to have problems.

 

In this article, I will go through the main five labels and discuss both sides of the debate- whether the debate is “should we use this term?” or “which of these terms is better?” (And yes, this is a discussion. I’m aiming to inform here, not persuade.)

 

I will be counting them down in what I believe to be the reverse order of importance.

 

[Edit- a few months after writing this I held a poll. 477 people answered questions regarding whether they used “mild, moderate and severe”, “high/low-functioning” and “autistic person”/”person with autism”. Those who are interested, the poll results can be found here (opens in new window).]

 

5: ‘Mild’, ‘moderate’ and ‘severe’ autism

I may have put this at number five, but it’s the one I’ve been confronted about most.

Yes, I know that I used ‘mild autism’ in the titles of both my most popular articles (Growing Up Autistic: 10 tips for teenagers with Asperger Syndrome or mild autism, and Asperger Syndrome: 50 facts about having mild autism). And yes, these days I’m less likely to use the term, having listened to both arguments.

But no, I’m not going back and changing those titles. I meant everything I wrote at the time, and I’m not going to change the past.

 

The case for using ‘mild, moderate and severe’

If you tell someone “an autistic person’s about to enter the room”, they may be surprised when someone like me walks in, making eye contact and smiling, using his voice to say hello… and talking about his years as a primary school teacher.

Like it or not, public perception of autism is not very diverse (yet). There may be a difference in how I get treated depending on whether I’m introduced as “autistic” or “mildly autistic”.

We need adjectives like “mild” or “severe” to help other people understand the extent of the autistic person’s needs.

 

The case against using ‘mild, moderate and severe’

You either have autism or you don’t.

Simple as that, really. There’s no middle ground. You can’t have a ‘mild broken leg’.

My autism plays a large part in my personality, regardless of how it affects me academically. If you leave learning difficulties out of the conversation, autism affects all autistic people personality-wise.

 

My personal opinion

A friend of mine once left a Facebook comment that really stuck with me. I can’t find it anymore, but it was along the lines of:

I worry about my son being called ‘mildly autistic’, because people may think that his autism doesn’t affect him that much.

And that’s a perfect way of putting it. There is a huge, huge difference between someone who is “mildly autistic” and someone who is “mildly affected by autism”.

 

I have known severely autistic children who are literally the happiest kids I have ever had the pleasure to meet.

I have also met mildly autistic people who have attempted suicide because they feel too alienated from the rest of society. (They may have been mildly autistic, but they were severely affected.)

This may be a controversial comment, but for some people it is much harder being on the milder end of the spectrum. Because once you’re intellectually capable of understanding what society expects from you (and the social consequences of not reaching those expectations), things can get bloody scary.

 

Words like mild, moderate and severe are, like I said, necessary evils. They help to differentiate between levels of intellectual ability.

Beyond that though, don’t expect them to describe much.

 

After all, words aren't half as good as we want them to be.

After all, words aren’t half as good as we want them to be.

 

4: ‘Person with autism’ versus ‘autistic person’

Ok, I’ve seen some ferocious keyboard battles over this one.

Not that these battles have actually helped anyone on the autism spectrum, but at least people are at each other’s throats about how to be polite.

 

The case for using ‘person with autism’

When I was training as a teacher, one of the very first things they told me was “they are not ‘special needs kids’. They are kids with special needs.”

The sentiment is simple. The most important thing about them is them. Not their added extras.

 

Also, you wouldn’t call a person with cancer ‘a cancerous person’. Their problems are not a part of the person they truly are, so don’t talk as if they are.

 

I remember the very first time I walked into a special school, as a fairly inexperienced teaching student who was very keen to learn. I was so keen to learn that I set about trying to establish what each student’s condition was, so I was better placed to help them from Day One.

I cringe a little now, thinking back to that. I should have done what I spent the rest of my teaching career doing: getting to know the students as people. Their personal needs were so much greater than their conditions alone.

 

The case for using ‘autistic person’

This argument, in my experience, seems to be favoured by most autistic people. (Maybe that alone wins the debate.)

 

Because, by saying “a person with autism”, you’re trying to disassociate them with their autism.

This automatically means the person saying the sentence thinks autism is bad.

 

Think about it. I use my left hand while writing, but you wouldn’t call me “a person with left-handedness”, because it would sound like it’s deficient to be left-handed.

Autistic people often consider their autism as something central to them. Not just their personality, but their very identity. So it can feel very hurtful if you imply that their autism needs to be shoved to the back of the sentence, because it must be such a negative part of them.

 

My personal opinion

To be honest… I don’t care about this half as much as people might think.

Why? Because if I’m trying to comfort a child mid-panic attack, while they’re yelling in fear and unable to express what’s triggered their anxiety, the last thing I’ll be thinking about is the correct way of ordering the words in my sentences.

In fact, I once took an autistic child to hospital during an epileptic seizure. And funnily enough, when the paramedics came I wasn’t wondering whether to say “he’s autistic” or “he has autism”.

 

If I had to choose which side has the stronger case, I’d go for ‘autistic person’ hands down. But practically speaking, I just go with whichever one sounds best in the sentence.

The English language has far more pressing things to be pedantic about.

After all, the English language has far more pressing things to be pedantic about!

 

3: ‘High’ or ‘low-functioning’

Ok, I have to admit the words here do sound fairly emotive- if not judgemental.

 

The case for using ‘high/low-functioning’

You could pretty much copy and paste what I wrote for ‘mild, moderate and severe’.

 

When people hear ‘autism’, they often hear ‘learning difficulties’. Of course, this is not necessarily true. And even in the cases when it is, it’s only true to different extents.

High and low-functioning were invented to determine the autistic person’s level of ability. Without using the phrase ‘high-functioning’, people only have the word ‘autistic’ to go on… and may assume that the person’s ‘low-functioning’ like most autistic people are reputed to be.

 

The case against using ‘high/low-functioning’

Let’s face it, it sounds pretty insulting to call a struggling child ‘low-functioning’.

And let’s face it, it sounds too much like an ego boost when telling other people “actually, I’m high-functioning.”

 

Even though ‘high and low functioning’ are sometimes necessary in order to help others understand your child, the positive/negative connotations make them fairly inappropriate- especially when you’re talking about a subject as sensitive as autism.

 

Besides, they’re not always accurate. I read a Facebook comment that sealed my opinion on this:

“My autistic girl is eight years old. She’s not toilet trained, but she’s reading The Hobbit. Is she meant to be high-functioning or low-functioning?”

 

My personal opinion

You know, I tried to write a more convincing case for using ‘high/low-functioning’… but I just couldn’t. I find them belittling.

I may use the term ‘high-functioning’ when talking to a depressed youngster with Asperger’s, whilst reassuring him that his condition is not a curse. But I wouldn’t use it to describe myself. It would sound like I’m showing off.

And ‘low-functioning’? Never to anyone, never about anyone.

 

If you’re going to classify levels of difficulty, why not use ‘mild’, ‘moderate’ and ‘severe’? They’re just as descriptive, have the same good and bad points, but they’re a hell of a lot less emotive.

'High functioning' and 'low function' would BOTH be inaccurate here.

‘High functioning’ and ‘low functioning’ would BOTH be right here. They would also both be wrong.

 

2: ‘Asperger Syndrome’ versus ‘Autistic Spectrum Disorder Level One’

This point will probably be less about using these terms as labels, and more about which one is better to consider as part of your identity.

For those who don’t already know, in 2013 the American Psychiatric Association published a fifth revision of the DSM- the ‘Diagnostic and Statistical Manual of Mental Disorders’, often referred to as ‘the psychiatrists bible’ in America. In this revision, it brought all autism-related diagnoses into one wide-reaching diagnosis: Autistic Spectrum Disorder.

This means that, in America at least, people are no longer diagnosed with ‘Asperger Syndrome’, but rather ‘Autistic Spectrum Disorder Level One’- the ‘Level One’ bit meaning less severely affected than those on ‘Level Two’ or ‘Level Three’.

A more specific (and well-written) description is available here.

(I’m not aware of this affecting Britain in the short term, and there’s no rational reason why it should. After all, we use the World Health Organisation’s ICD- International Classification of Diseases- rather than the American DSM. That said, as the saying goes, when America sneezes the world catches a cold.)

 

The case for ‘Asperger Syndrome’

It’s no coincidence that Asperger’s and autism were separate diagnoses for so long. It’s because they genuinely are different. Perhaps on the same scale with plenty of similarities, but different.

And of course, public understanding of people with Asperger’s is very different to their understanding of people with autism. If you just call everyone ‘autistic’, the terminology becomes so simplified that nobody will understand what you really mean.

 

For some of us, Asperger Syndrome is part of our identity. It’s a phrase that explains a huge part of our personality, and we don’t want it being replaced by a much more clinical, colder-sounding phrase.

(While we’re at it, Asperger Syndrome is two words long. Making the name longer does not simplify it.)

 

Besides, if we stop saying ‘Asperger Syndrome’, we’ll have no choice but to resort to other differentiating terms like ‘high-functioning’ or ‘mildly autistic’. As you may have gathered, I’m not up for that.

 

The case for ‘Autistic Spectrum Disorder Level One’

According to the 1,500 people who reportedly influenced DSM-5, the change was supposed to simplify diagnoses. People were being diagnosed with several disorders at once that were really under the same umbrella. On top of that, autism is characterised by a set of common behaviours anyway, so it’s simpler to use the same scale and differentiate according to severity.

 

But I think I may be the wrong person to write this paragraph. The doctors and psychologists know far more about Asperger’s than me.

 

(You know, when I wrote that sentence it honestly wasn’t meant to be sarcastic. But it did occur to me while writing it that someone who actually has the condition may have a valid opinion on the matter. So if you want to take that last bit sarcastically, feel free to.)

 

My personal opinion

Ok, maybe putting all the autism-related disorders on one scale does simplify things. Then again, some things should not be simplified. Like things that aren’t simple, for example.

So screw the experts. A whole generation of people with Asperger Syndrome are going nowhere, and neither is the name. I’ll keep using it until revision #6 comes out and the experts change their minds back again.

aspies

 

And the number one label for people on the spectrum is…

 

1: AUTISTIC.

Yes, ‘autistic’ itself can be used as a label. It frequently is. Often we don’t even notice.

 

I’m not going to argue the cases for and against using the phrase ‘autism’. It blatantly needs to be used. Autistic people suffered for a long time before we had a name for autism.

But please, please be careful before using it as a label. Like I said in the introduction, it is so easy to think of an autistic child as ‘autistic’, and leave it at that.

labelkid

The child is smiling in both pictures. But the second one may be told he has less to smile about.

 

Also, I’d like to give some very important advice to autistic people reading this, especially those who are recently diagnosed.

You are more than your autism. So, so much more.

Yes, my Asperger’s makes up a lot of my identity, and it drives a lot of my personality. But:

  • My Asperger’s did not make me become a teacher.
  • My Asperger’s did not turn me into a Christian.
  • My Asperger’s had no impact on my choice to become a fiction writer.
  • I get happy, sad, excited, frustrated, and a whole bunch of other words… just like every other human on Earth.

So, whereas my Asperger’s is a big and important part of me, it would be unhealthy for me to wear it as a label. If I allowed it to define me as a whole person, I’d miss out on so many parts of myself. The parts of me that I’ve chosen.

 

Conclusion: what attitude should we have?

It wouldn’t surprise me at all if the comments sections (here and on Facebook) light up with debate. I wouldn’t mind either- debate is healthy and useful. But bear this in mind.

No matter what phrase you subscribe to, you will never find an autism adjective that’s good enough to accurately describe you/your child.

 

I once heard an interesting quote from South African zoologist Lyall Watson:

If the brain were so simple we could understand it, we would be so simple we wouldn’t.

In a similar way, if autism really were simple enough to describe perfectly in two or three words, it wouldn’t be enough of an issue to bother describing at all.

And since it clearly is, our sentences need to be longer.

 

Use whichever descriptors you want, but understand that no descriptor will ever be perfect. They are simply our efforts to make different types of autism sound accurately different.

They are definitely not worth using as lifelong identification labels- for yourself, your child, or anybody else. Personalities are too big and complex for that.

 

If you really want to describe an autistic person’s personality, use more words.

 

Chris Bonnello is an autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).

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Picture credits:

http://all-geo.org/highlyallochthonous/2008/02/its-our-language-and-we-want-it-back/

http://www.rogerebert.com/reviews/rain-man-1988

 

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23 Comments

  1. Personally, I prefer Asperger for myself. But at one time (and I think my twitter ident still says it) I used autistically aspergian because I just do not know how to describe myself. Labels are words that sometimes hold little meaning for me.

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  2. Probably what most people know about me is that I can make them laugh even when their life sucks and I am getting extremely forgetful. So I guess you could call me a senile clown or a scatty old person with a good sense of humor. But there’s quite a bit more to me than that.

    You may be a young man with Asperger’s, but you are articulate, intelligent, sensitive, caring and kind. And you are a blessing to many of us who are or love someone who struggles with some problems associated with Autism.

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    • Thank you so much for your kind words. 😀 They mean a lot.

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  3. Could Asperger’s be described as the social equivalent to musically needing to take piano lessons instead of being able to play by ear?

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    • Ha, never thought of it that way! But yes, there’s some truth in that. Most people seem to pick up the “rules” without much studying, and some of us have to put more concentrated effort in.

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  4. I prefer Asperger’s Syndrome over “Autism Spectrum Disorder Level 1” simply because it’s easier to say. I try not to say more words than necessary, with little care about whether it’s politically correct or not. Same reason I say “autistic person” instead of “person with autism.” I hope that doesn’t make me a jerk.

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    • One thing I’ve learned very quickly about trying to use “correct words” relating to autism- whatever you choose to say, someone will want to tell you you’re wrong. 😉 I do believe that “autistic person” has the stronger argument, but in practice I just use whichever one comes to my head first. Putting sentences together at speed is tricky enough for me anyway without having to make those kind of decisions while I’m talking! 😉

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  5. Speaking as an autistic teenager (my preferred label is “type-2” or “moderate”), it took me a while to even figure out the distinction between “autistic person” and “person with autism”. So basically, I really don’t care.

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    • Haha- in a way, that’s great to hear! 🙂 I often think people get so bothered about trying not to offend people that they forget how little some of us care about their word order. 😉

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  6. I happen to be extremely sensitive, just a part of who I am, (and possibly how I was introduced to Aspergers/Autism in the first place,) but to me, the merging of Aspergers and Autism is what finally got me diagnosed properly. I had the ‘high-functioning’ of Aspergers, but with the traits more typical of Autism. Of the two, the latter feels much more comfortable to me, a truer reflection of both my strengths and weak points (not limits). This could be though, because my understanding of Aspergers is still based more on stereotypes then real criteria.

    Though you said ‘And let’s face it, it sounds too much like an ego boost when telling other people “actually, I’m high-functioning.”’ I needed that ego boost just in my own head. It probably saved my self esteem that I wasn’t broken, I was ‘high-functioning’. To this day, it helps me recognize that I am capable– though I’m going through a hard patch now. I would never shove it in people’s faces, but at this point, everyone who knows my diagnosis/es knows who and what else I am, and most people, by this point in my life, hard work, and a lot of grace of G-d, just think I’m bright and a bit nutty. I’ve been considered worse!

    I don’t like talking about myself, and I still can’t believe I’m doing this, but you’re right. We need more perspectives out there, and this is mine. I am definitely not a typical case, however, and this should be understood when you read my post.

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    • Hi, thanks a lot for the reply. 🙂 You’re right of course, we need as many different autistic perspectives as possible, and I’m very glad you shared yours!

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  7. I have recently had a multi-disciplinary meeting at school regarding getting my son diagnosed with Asperger’s. My husband is on the diagnosis pathway and my son shares many characteristics with him. His anxiety levels tend to take off over relatively minor things and I am at a loss for how to help him deal with that – it is fine at home, but he struggles at school though he doesn’t let anyone there know. He waits until he gets home and tells me so that I can help him work out a way to manage whatever has happened. At this meeting, I was told that he in no way could be autistic and that to pursue such a diagnosis would be causing him harm. These very same professionals were surprised when I told them he doesn’t do eye contact – and that is not my observation, that is him saying he only looks at mouths or pretty much away from the person. I can see that his personality/temperament are such that if we don’t sort something out soon, he will develop self harming tendencies. He is a super intelligent kid, who loves books and chess and can talk the hind leg off a donkey, so therefore he can’t be autistic. Now it is up to me to find another avenue to see what can be done, as I know I do not have the skills of a mental health professional should he need them. Any advice on this would be gratefully received. I love reading your articles – they give me great hope for his future…
    Andrea Cross

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    • Recently, I made a difficult decision. I faced my own lack of self esteem, thin skin to perceived criticism, my internal connection of ‘me being different’ with ‘wrong’ and my being fed up with testing; and asked my parents to please have me evaluated again, now that I was older and able to co-operate. I wasn’t content with ‘Probable ADHD,’ ‘Possibly but the psychiatrist was a loony Aspergers’ and ‘twice exceptional but we’re not sure why.’

      On the outside, I also look pretty normal. I also talk ‘a mile a minute,’ am very brainy (not bragging, that’s what the test results said 🙂 ) and, as a teacher pointed out recently, can speak and advocate for myself better than most teenagers with totally normal heads. These days, though I’m known as quirky, I doubt most people, even those I know well, would ever guess I’ve been diagnosed with Autism. I can get what I want out of nearly everyone, make all my friends feel special, charm teachers, and am in the highest level class for nearly everything at school

      They don’t know the meltdowns– not over sensory stuff, but over emotional and stress overloads. The headbanging and biting and crying when I was younger and unable to handle being bullied. All the stupid things I’ve done over the years because I just don’t get it. The social impossibilities. (For years, I thought I was an introvert, because I just didn’t know how to handle being around people.) The hating myself. Forgetting everything, everywhere, all the time.

      Being diagnosed with Autism a few months ago wasn’t a miracle cure, but it gave me peace of mind. When you know what the problem is, you can take steps towards fixing it. I’d asked for the testing and been involved in the process willingly, so I couldn’t deny the results. They helped me understand why I do what I do, why some things are harder than others, and just EVERYTHING

      I hope this whole ton of words was helpful to you. I read your post and thought– I’ve been in your son’s place. I’ve been so good at coping that I hid my symptoms for too long. I wish I could offer resources to help you, but… all I can say is DON’T GIVE UP! He sounds like an exceptional kid and I hope that you will all get the answers you need. It’s so worth it, because even though your son doesn’t change just by having the official diagnosis, the treatment of him will. (In many ways, the false ASD diagnosis was a blessing– it got me through middle school.) Good luck!

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      • Sorry this was so long. If you or your son want to contact me to find out more about how I personally manage to ‘manage’ the world, feel free to ask Mr. Bonnello for my e-mail.

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      • Thank you for all the words – it is nice to be listened to and not told that I am going to harm him with seeking a diagnosis. Funny enough, I showed them the book All Cats Have Aspergers and he identified so strongly with it. He knows that his daddy is getting help for the things he struggles with. He was able to tell the nurse in hospital that I suspect he has Aspergers – when she asked if he knows what that means, he simply replied that it means his brain works differently to most other people. He also has Color grapheme synesthesia, which makes doing math pretty tricky for him. I see my husband struggle so much and I want to get ahead of things so my son doesn’t have to suffer in the same way. To be told, well he tests through the roof in reading and comprehension, so he can’t be autistic. He does great with inferring, so autism not possible. Just a bit frustrated, really…
        Again, thank you for sharing – any tips you have for managing the relationship between an ASD dad and the children would be amazing!

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    • Hi- thanks for the message and for the compliments. 🙂 I’m glad you’re also getting good advice in the form of Mi’s comments too!

      I don’t know where they’re getting this information from, but pursuing a diagnosis does NOT cause harm to a child. The worst that can happen is either not getting a diagnosis, or getting a diagnosis when one isn’t appropriate.
      It’s people’s attitudes along the way that run the risk of causing the damage- so as long as you’re not telling him “we need to get your head looked at because you’re extremely, extremely different and I want answers”, that’s not damaging. 😉

      Glad you’re looking at other avenues, whether or not it ends in the diagnosis you want. 🙂

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  8. your last link has been hacked, unable to cut/paste to show which one more clearly

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    • Thanks. 🙂 That link was automatically put there by WordPress- I’ll try to see if I can delete it!

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  9. I completely disagree with the ‘you’re either autistic or you’re not’ claim. It’s like saying ‘you’re either tall or you’re not’. If you’re 7’1″, everyone agrees you’re tall. But what if you’re 6’2″? Or 5’11”? Where exactly is the cutoff? And if we set a cutoff (such as taller than 95% of the population) there’s going to be two people who are only an inch apart in height, but one is considered tall and the other is not.
    Autism is similar, except it’s a lot harder to measure precisely, so those two on the border will find that their classification changes due to random error and which test is used. Meanwhile, there are people who are not diagnosable at all, but still show more autistic traits than average (many of whom are family members of autistic people).
    Oh, and incidentally, there is such a thing as a mild break. My Mom has broken her left arm twice. The first time, she was in so much pain they gave her morphine before setting the limb. She had it casted, and then the cast slipped and she needed surgery to realign the bone. The second time, they could barely find the break on the X-ray, didn’t need to set it, and gave her only a sling, not a cast. My Dad also found out recently that he got a boxer’s fracture several years ago at karate. It was a bit painful, but not enough to seek medical attention, and they only discovered it incidentally while looking for something else.
    Real life is often a lot more subjective than people think.

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  10. What is your opinion on using ‘Autistic Spectrum Condition’?
    I think this a big improvement on using ‘disorder’, at least for those with a ‘milder’ presentation of autism. It will be interesting to see what terminology is being used in 10 or 20 years from now.

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    • I’m tempted to agree with you! “Condition” sounds less judgemental than “disorder”. 😉

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  1. It’s called a spectrum for a reason… | The blog with (more than) one post... - […] about this and other labels can be found on Chris Bonello’s website ‘Autistic Not Weird’: http://autisticnotweird.com/labels/. In addition to…
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