So…What *Is* Autism?

The toddler group we used to go to has finally started back up, which is good when the weather’s pretty dreary but the cubs need to get out of the house.

I can’t wait ’til they’re old enough to enjoy sitting on the sofa with
a cup of tea on days like this.

There was a nice couple at the group whose little boy has now started school but they came along to offer moral support to the woman who’s taken over the running of things (and I imagine for the tea, as well – that’s at least half the reason I go).  I used to chat with them quite a bit before summer so they knew Tyger was being assessed for ASD and I mentioned the fact he got a diagnosis.

That’s when the inevitable happened.  The dad (not so called just because I anonymise everyone on here but because I can’t actually remember his name) asked me what having ASD actually meant for Tyger.

I love the fact he asked because he didn’t assume he knew, he was genuinely interested and he wanted to hear from someone who had knowledge and experience of ASD.  Great.  Really, really great (no, genuinely great – why do I always read that word in a sarcastic tone??).

I also hate the fact he asked because I never know what to say.  Autism spectrum disorder is a…well, a spectrum and a disorder (ah, I see what they did there!).  It’s not one thing and it varies for everyone.  Just thinking about Tyger alone and what ASD means for him is really hard because it’s a combination of lots of behaviours and thought processes that all interact and change.  And it affects others on the spectrum completely differently.

I stuttered a bit about his sensory problems, anxiety and social issues but I don’t think I really shed much light on what ASD actually is.

So, what is autism?  This question is harder to answer than you might think.  Right now we don’t know the cause of autism so it’s a term used to cover a collection of certain behaviours (and by ‘we’, I mean humanity in general  in case you had visions of me conducting studies and looking at brain scans and…other sciency things).  Of course, we don’t know whether this collection of behaviours is even always caused by the same thing.  In some families – like mine – there seems to be a very strong genetic element.  When there are many families with many diagnoses of ASD it’s hard to imagine it’s a coincidence.  However, there are also people with ASD who appear to be the only ones in their family.  There are also many cases of children showing enough ‘autistic traits’ for a diagnosis where these traits have probably come from the fact they have been deaf or had hearing difficulties for the first few years of life.  Other times it is perhaps an overlap of other conditions or disorders (like dyspraxia or OCD) that present as ASD.

Hopefully, in the future we’ll have a way of separating out these similar and/or related conditions and disorders leading to better treatment or support for them all.  For now, though, there are certain diagnostic criteria for ASD but they do seem to vary depending on where you are and even which set of professionals you happen to end up dealing with.

The NHS website breaks down ASD into two main ‘symptoms’:

  • Problems with social interaction and communication.
and:
  • Restrictive and repetitive patterns of thought, interests and physical behaviours.

You may also have heard of the ‘triad of impairments’.  This is not a member of the Chinese mafia who deals with problems and difficulties.  It is three areas in which people with ASD struggle, often demonstrated by a triangle:

What do you think of my incredibly basic awesome Paint skills?

Depending on where you look, the exact wording might be different.  You might find ‘flexibility of thought’ becomes ‘social imagination’, for one thing, but generally the three ‘impairments’ cover the same things regardless of the exact wording.  Does this all sound a bit vague and confusing and like there’s a lot of cross-over?  Welcome to my world!

It might help for me to use Tyger as an example to put these terms in context a little (or it might not but if you’ve made it this far you’re about half way so might as well keep going now).

Social Interaction

Tyger struggles with ‘appropriate’ social interaction.  It’s not that he doesn’t enjoy talking to people because he does…a lot.  But he’ll stand or sit too close to them because he’s completely unaware of other people’s personal space.  If I find him a bit suffocating then I can imagine it’s off putting for other people (and I’ve seen other children get angry with him ‘playing’ by pretty much sitting on them so kids pick up on this stuff from a young age).

Whilst I hate the emphasis put on eye contact when discussing ASD, Tyger does have reduced eye contact and he finds it tiring to have to look at people’s faces for any length of time (a conclusion I only reached quite recently, as I wrote about here).

He struggles to identify other people’s (and, in deed, his own) emotions.  More than once, Baby Bear has cried and Tyger’s response has been, ‘Look, Bear’s happy!’

Language and Communication

This does not mean Tyger is ‘behind’ in his language.  In fact, as the speech and language therapist (SALT) put it, his language is very ‘sophisticated’.  He had over 200 words in his vocabulary when he was 18 months old, which is quite a lot (for anyone who doesn’t have kids: the average for this age is something around 20-50 words (and for anyone who does have kids you’ll have obsessed over numbers like that until your child was at least two so you’ll already know)).

There were some oddities, though.  ‘Mummy’ and ‘yes’ were not included in those 200+ words!  Two of the very first words children learn and they were nowhere to be seen.

In a similar vein, the SALT said it was interesting to note how – despite Tyger’s language being advanced in many ways – the areas of language where he was more average or even slightly below average were connected with social awareness.  For instance, he comes out with amazingly grown-up phrases and has a huge vocabulary but still uses ‘he’, ‘she’ and ‘it’ interchangeably when talking about people.

It’s also very common for people with ASD to have trouble processing language.  With Tyger – and with other members of my family – this means he will frequently respond with ‘what?’ to anything you say.  He’s heard the words but needs a moment to actually make sense of them although I wish he would do so without the immediate ‘WHAT??’.

Flexibility of Thought

The worst part of this for Tyger right now is the fact he seems to think once he states an idea, it is agreed upon and will happen.  So, ‘I know, let’s go outside,’ in his head is, ‘Everyone has agreed we will definitely go outside this instant.’  It’s hugely frustrating and no amount of ‘no’ stops him.  I’ve tried other tactics like explaining the weather is awful but he’ll just come back with, ‘I have an idea; let’s wear our boots.’

I need to hide these!

He just keeps asking, and telling, and explaining and generally going on and on and on and on and on about going out-smegging-side for hours and hours and hours and hours and…you probably get the picture.

He also struggles with changes to routine and ‘the norm’.  He has a biscuit after lunch every day so if he sees a character on TV eating a biscuit before lunch he’s utterly incredulous.  The mere suggestion of such blatant disregard for biscuit eating rules is unthinkable to Tyger.  There are also two lanes from the road to his preschool: one big and one small.  My mum dropped us off nearer the big lane the first few times we went so Tyger cannot go down the smaller lane on his way to preschool.  On the way back, yes.  On the way there, don’t be so Goram ridiculous.  Going down the small lane on the way to preschool is almost as bizarre as eating a biscuit before lunch.

So, could I have just said all that to the guy at the toddler group?  Even if his eyes didn’t glaze over after the mention of eye contact it doesn’t mention all his sensory issues, which are a massive daily problem.  It doesn’t touch on meltdowns, what causes them and what they’re like.  And it’s just picking out a few points from the many, many battles and problems and differences Tyger faces every day.

It’s a tough one.  I want people to ask because I’d rather they showed an interest than either avoiding the subject or making assumptions and silently judging.

But I don’t know what to say when someone actually does ask.  I want to get across everything but I don’t want to lecture them until they turn off.

Any suggestions gratefully received.

Linked with:
 
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A Bit Of Everything

Mummy and Monkeys

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21 Comments


  1. Thank you so much for shedding some light on this. I never even considered the flexibility of thought part of Autism. Can't help you on finding a better way of explaining it to people, but this is certainly a very good start and if we had an hour and lots of tea, this would have been the perfect explanation as to what it means for your little boy.

    Reply

  2. Thanks. The flexibility of thought part is really central because it covers a need for routine as well as the way children with ASD often struggle with imaginative play. Tyger has loads of lovely toys and figures but past acting out a few scenes from TV shows, he just doesn't know what to do with them.

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  3. This was a really informative post. Thank you so much for sharing it. When someone asks you that question, if you are able to answer in such an interesting and good humoured manner, I'm sure it would never come off as lecture-ish. Also, your paint skills are marvellous. #abitofeverything

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  4. Your little boy sounds a lot like mine. If you want to pop over to MummyShambles on WordPress I have also written a post on Autism, specifically respite for this weeks #abitofeverything.
    "Autism is a lifelong developmental disability that affects how a person communicates, with and relates to, other people. It also affects how they make sense of the world around them."
    This is the definition of autism on the NAS and I think it sums it up pretty well.
    Each child's autism will be unique to them. I can see my little boy in the way you have described yours but there will be differences. It is a complex disorder but your post is very informative and people need to understand autism better so I will be sharing this post. Nicely done. 🙂

    Reply

  5. Haha. My glorious paint skills and I thank you. I fear I'm less eloquent in person without the ability to edit as I go but I do my best to explain it to people.

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  6. Maybe I should memorise the NAS definition for future conversations! I always find any definition I give seems so lacking, though. Technically it might be right but it doesn't really help people who don't know anything about ASD understand what's going on with our kids, you know? Maybe I'm just hoping for something completely unrealistic.

    I really enjoyed your post.

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  7. It's so funny that you wonder what to say because you just said it so well but this is a blog and trying to explain it to a person during a 5 minute conversation might overwhelm them. I used to have the same problem explaining it to people, especially when I was just learning about it myself but I would just tell them some of the things my son needs a help with. My son didn't start talking until he was three and even then, he would just repeat me several times. He had Echolalia. It was hard having conversations with him. He's 13 now and can have a conversation but because he lacks some social skills that we are still working on, it's so much easier for him to text me when he is having an issue. Love your post! Visiting from #abitofeverything

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  8. I read this so quickly because I was nodding along thinking yes yes yes! My son has ASD too and I always find this hard to answer. When asked I either I go into panic mode or lecture mode and I hate both of these. Like you said you don't want to turn people off. What I think people really want to know is how to help your child, his needs! I usually say it means he has a busy brain; he needs short direct instructions. It helps if you say his name before asking something. He may not look at you when talking. He has problems with buttons, laces etc I really enjoyed reading this because as well as raising awareness it shows that as parents we don't always have the answers too. Thanks for your honesty!

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  9. This is a great post. Very informative and helpful, especially for anyone whose child has just been diagnosed. It must be very frustrating dealing with something where there are no rules and no two cases are the same
    Thanks for linking up to #AnythingGoes
    Debbie

    Reply

  10. This is such a great post. So informative. I am aware that autism is very different for each individual but it's really interesting to read how it is for your son. Thanks so much for linking up with #TwinklyTuesday

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  11. I have this need to over-explain things. I can't bear the thought someone might misunderstand me or I might miss something out and I think that makes it harder because I want to get across everything. I want to be able to cover all aspects of ASD and all the ways it affects Tyger if I'm asked. But that's ridiculous because I'm still learning and it's far too much to fit into a single conversation.

    My 16 year old sister with ASD prefers communicating through text/email etc. as well.

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  12. I think you're probably right. They want to know how to behave with him to best help him. I should consider that the next time someone asks!

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  13. It is frustrating. It means even people who do have experience with ASD might be confused by the way Tyger presents. Luckily, awareness is grdually growing and it's already much better than going back just a few years.

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  14. Thank you. I think it's always interesting to find out a little about the struggles other people have and ASD just adds another layer.

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  15. I can imagine trying to get all this and more across in a quick conversation might be difficult, but that's why it's brilliant that you write this blog. The chances are any one who is still curious after speaking to you is likely to Google 'what is autism' or something along those lines and you'll help to educate people. I can imagine it's a challenge at times but he sounds such a character your posts make me smile!
    Thanks for linking up to #Picknmix
    Stevie x

    Reply

  16. I can imagine trying to get all this and more across in a quick conversation might be difficult, but that's why it's brilliant that you write this blog. The chances are any one who is still curious after speaking to you is likely to Google 'what is autism' or something along those lines and you'll help to educate people. I can imagine it's a challenge at times but he sounds such a character your posts make me smile!
    Thanks for linking up to #Picknmix
    Stevie x

    Reply

  17. Very well explained. I can understand the flexible thinking even being an autistic adult I still very much struggle with understanding why people don't follow my thoughts X #spectrumsunday

    Reply

  18. I don't have any suggestions I'm afraid! Nobody, other than a few family members have ever asked me what it all means for Hayden, I really wish they would, but like you, I'm not sure I would be able to explain it in very short sharp reply that would allow their understanding, maybe direct them to your blog? You explained that so well, it's actually really refreshing to read what others have to experience, whether it be similar or different. Thank you so much for linking up to #spectrumsunday, I really hope to see you again this week. And remember, old or new posts are absolutely fine 🙂 I quite like reading the older posts as I haven't come across many of you before so it's nice to get a bit of a back story xx

    Reply

  19. Thank you. After some recent issues with anonymity I'm not sure I'd refer them here but maybe I should learn by rote what I've written!

    Reply

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