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Tuesday, 2 April 2013

World Autism Awareness Day. What is Sasha really like?

Hello! Did you realise it's April 2nd today? It's World Autism Awareness Day (which handily falls within World Autism Awareness Month).

I'm fairly sure that all my nearest and dearest know by now what Autism is, but I just thought I'd do a little refresher for anyone who has come across my blog recently.

According to the NAS (National Autistic Society),

 'Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction'.'Autism is a complex developmental disability involving a biological or organic defect in the functioning of the brain'.

Historically there have been sub-categories within the Autism diagnosis - Classic Autism, then High-functioning Autism or Aspergers. Again according to the NAS:

High-functioning autism and Asperger syndrome are both part of the 'autism spectrum'. The main difference between the two is thought to be in language development: people with Asperger syndrome, typically, will not have had delayed language development when younger. 

We believe Sasha falls under a third sub-category, called PDA (Pathological Demand Avoidance*) and we have been referred to GOSH (Great Ormond Street Hospital) for a visit this summer (on my birthday!) for a more detailed analysis of her condition. The NAS description of this is:

People with pathological demand avoidance syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.


There is a move about to happen, to take away the subcategories and just give a diagnosis of Autism. I agree with this on the basis that to increase understanding, we should focus on one word/name rather than confuse people - and as the popular saying goes, 'If you've met one person with autism, you've met one person with autism'.

However, on the other hand we believe there are some slightly different strategies for PDA which are more effective for Sasha - for more detail please see my footnote.

Sasha was diagnosed with autism, or ASD (Autistic Spectrum Disorder) as it is also known, when she was just 2 and a half years old. She will be six in June and I'd like to share with you what autism means with regards to how Sasha is now.

Sasha's speech was delayed, and that was the reason we were first referred to a paediatrician. We didn't have many worries about her behaviour back then - we knew she was strong-willed, but so are many toddlers, right? 

Now she has pretty much caught up to her peers in terms of speech. She can have a conversation with you, although she is prone to going off at a tangent or steering the conversation round to what she actually wants to talk about. Her sounds are not totally clear - she struggles with 'S' and 'f' for example, and her grammar can be a little unusual - most past tenses have extra 'd's on the end, like gonded instead of gone, sitted instead of sat and 'I maded it happen'. Gone are the days though, when she used to call Tamsin 'Gah-woo' (probably due to her difficulty with 'T' at that time!), and when she constantly mixed up 'he' and 'she'. Recently she has taken to saying inappropriate things a little too loudly at inopportune moments - like 'look, there's a little mummy!' within earshot of a fully grown woman who just happens to be slightly shorter than most, or my personal favourite, when she was in the pool changing rooms with daddy, and standing next to a boy her own age with no clothes on, 'look, there's something popping out of his bottom!' with her finger pointed directly at and only centimetres away from said object. For more of Sasha's funny expressions, see my previous posts Sasha-isms, Sasha-isms part deux and Sasha-isms Part 3.

Sasha's strong will is probably what sets her apart most from other children. It's an extreme of behaviour that can be really difficult to cope with. Often her reactions are driven by sensory issues - too much noise, too many people, physically uncomfortable places or clothes will all cause her to withdraw herself or meltdown. Fortunately the meltdowns happen much less frequently these days, and we believe that Sasha is becoming more aware of issues which will cause her problems. A lot of the time though, it is either her fear of a situation or the lack of control which drives the extreme reactions. Her inability to be like all the other children and just join in with group requests is definitely the autism in practice.

She is sociable, but doesn't understand the rules of being social. In the playground she is happy if she is leading the game and others are following her rules, but she is not happy to be directed or led by others - 'give and take' is still an ongoing lesson for her. Likewise, in the classroom, she is happy to stand up at the front of class and give the other children orders, like 'put your coats on children, and remember to do the zips up', but she is not happy to be one of the pack and listen to others giving orders. Yes, there may be other children in the class who are not happy with that either, but the difference is that Sasha will noticeably refuse, or withdraw, or become agitated. She likes routine - but only if it is of her choosing, and on a good day she is fine even with unexpected change, if it is explained to her. She has been described as having 'subtle control' in the classroom.

Sasha is our bundle of joy - quite a big one these days! For breakfast she has a mini pepperami, followed by Weetabix then 'mummy toast' (toast with just butter as opposed to marmite like daddy has!), then a banana (which has to be green, not yellow). Then she'll follow that up with her lunch of 'four cheese sandwiches, 10 crisps and chocolate please' at about 10am when at home - I've no idea how she manages to hold out for school dinner. For the rest of the day she will declare she's hungry at regular intervals but rarely eats any hot food other than chips. She is definitely a creature of habit as far as food goes and it's a long struggle to get her to try anything new - although, in a 'typical child' kind of way, she will eat brown bread or all the crusts on her sandwiches if at someone else's house or a party. Still, her food inflexibility at home doesn't seem to be doing her any harm!


She is happy nearly all of the time, she is very loving, she is always polite and helpful, she is curious, she is not materialistic, she has lots of energy, she loves using different languages, she is caring and she is often extremely funny. We never have a dull moment with her around and we love her to pieces. Autism is not a bad thing, it's just different. Different, not less.


*A further excerpt from the NAS website describing the characteristics of PDA:

People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, usually because they need to control the interaction. They often have highly developed social mimicry and role play, sometimes becoming different characters or personas.
The main features of PDA are:

  • obsessively resisting ordinary demands
  • appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
  • excessive mood swings, often switching suddenly
  • comfortable (sometimes to an extreme extent) in role play and pretending
  • language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
  • obsessive behaviour, often focused on people rather than things.
Often in cases of PDA there will have been a passive early history, but this is not always the case. It is believed that there may be neurological involvement in some cases, with a higher than usual incidence of clumsiness and other soft neurological signs.
The main features of PDA are described in more detail below. Other children on the autism spectrum can display one or more of these features but when many occur together it is helpful to use the diagnosis of PDA because things that help people with autism or Asperger syndrome do not always help those with PDA.
People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a 'Jekyll and Hyde'. It is important to recognise that these children have a hidden disability and often appear 'normal' to others. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.
People with PDA are likely to need a lot of support into their adult life. Limited evidence so far suggests that the earlier the diagnosis and the better support that they have, the more able and independent they are likely to become.

6 comments:

  1. So many similarities to Dais and yet not quite! Waiting for an appointment with CAMHS. Where did you get Sasha's diagnosis from?

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    1. From the community paediatrician, based at Children's Centre. Will email you chuck :)

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  2. so many similarities to J too. Especially the sensory side of things. All the best with the GOSH appointment! I like the 'mummy' toast - that is so sweet when they refer to things like that. xxx

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    1. Thanks. I'm both nervous and excited about GOSH!

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  3. Nice post on Autism Awareness Day. I think if everyone could get to know one person on the spectrum, we all would be better off.

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    Replies
    1. Thanks Yuji. Yes, I'm so glad my eyes have been opened to the 'other side'!!! I think everyone who gets to know Sasha is lucky :)

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