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Monday, 18 April 2016

Early post-diagnosis thoughts on PDD-NOS and PDA

Picture is of Sasha at an amusement arcade; fingers in ears to block out the noise. On a good day, this can work for short periods; on a bad day we'd have struggles persuading her out of the house in the first place.
Today's recap of the early days after our girl's diagnosis of autism looks at some more examples of behaviour of our 2 year old and how she differed from our older girl. It was a difficult time, as a lot of the behaviours seemed similar to those that might occur with any toddler - at that age, meltdowns and tantrums look fairly similar and it can be difficult for outsiders to distinguish them. I could always tell the difference though - my way of describing it was that Sasha's emotions were just more 'extreme'.

Interestingly, it was at this point when I obviously first started thinking that Sasha didn't quite fit the 'typical' autism diagnosis (if there is such a thing). It was only a month after the first suggestion of autism, that I already felt the label wasn't giving us all the answers. In my post at that time, I talk about PDD-NOS (Pervasive Development Disorder Not Otherwise Specified). This is also sometimes called Atypical Autism, and it is occasionally given as a diagnosis when the child's behaviour pattern fits most but not all of the criteria for typical autism. Pervasive Development Disorder is actually the official term for Autism Spectrum Disorder; the latter is what is now more commonly used.

It made sense that Sasha wasn't diagnosed with Asperger's Syndrome, as a distinguishing factor for that was early, advanced speech (Sasha's speech was delayed). However she also didn't show many classic autistic traits - no flapping or repetitive play for example, and she was quite sociable. At a later date, which I'm sure I'll get to with my recaps, we came across the term PDA - Pathological Demand Avoidance. The characteristics for PDA described Sasha almost perfectly and it was our 'lightbulb moment' - something experienced by several parents whose children don't seem to be classified very well by the terms Asperger's Syndrome (AS) or High-Functioning Autism (HFA). More of that in future posts of course, but for now I'm going to use the words of the National Autistic Society to try and explain the difference between AS and HFA, as they cover it much better than I can:

What's the difference between high-functioning autism and Asperger syndrome?

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.
Gillberg and Ehlers (1998) identify four main areas where controversy over the difference in diagnosis still exists.

LEVEL OF COGNITIVE FUNCTIONING

The view that Asperger syndrome is autism without any additional learning disability is helpful from the diagnostic point of view as it is fairly easy to make a distinction in these circumstances. However, Asperger himself said that there might be unusual circumstances where a person could present the symptoms of Asperger syndrome with additional learning disability. It is widely recognised that high-functioning autism cannot occur in someone with an IQ below 65-70.

MOTOR SKILLS

In recent years the view that Asperger syndrome can only occur when there are additional difficulties with motor skills has become more prominent. Certainly Asperger himself was well aware of the prevalence of motor skill problems in the group of people he tried to describe. It seems likely that most children with Asperger syndrome experience poor co-ordination and difficulties with fine motor control. However, many children with higher functioning autism will also have difficulties in these areas.

LANGUAGE DEVELOPMENT

This is the area that probably causes the greatest controversy. Both ICD-10 and DSM-IV1 state that for a diagnosis of Asperger syndrome, spoken language development must be normal. Children with high-functioning autism may have had significant language delay. However, Asperger's original descriptions of the condition stated that speech and language peculiarities are a key feature of Asperger syndrome. Often diagnoses of Asperger syndrome are made when a child is quite old and they or their parents may have difficulty remembering the details of their language development.

AGE OF ONSET

A diagnosis of high-functioning autism and one of Asperger syndrome can be made in the same individual at different stages of development. Occasionally a child has been diagnosed with high-functioning autism in early childhood and this diagnosis has been changed to Asperger syndrome when they started school. Some diagnosticians are clearly of the view that Asperger syndrome cannot be diagnosed before a child starts school. However this is largely because areas such as social skills deficits may not become apparent until a child spends a lot of time in social settings.

To summarise
  • Both people with high-functioning autism and Asperger syndrome are affected by the 'triad of impairments' common to all people with autism.
  • Both groups are likely to be of average or above average intelligence.
  • The debate as to whether we need two diagnostic terms is ongoing.
  • However, there may be features such as age of onset and motor skill deficits which differentiate the two conditions.

Hoping that gives a small insight; below are my posts from that time where I start to wonder how we can best describe our girl.

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I am wondering, given the past week of good behaviour, if people think I make things up about Sasha - in fact I sometimes wonder if I'm imagining things myself! Makes me feel a bit alone to be honest - no-one else really sees her for as much time and as constantly as I do, and her behaviour is obviously different towards different people, especially if she thinks I'm not around. What am I doing wrong, or is it just that all children know how to play their mums?! However the books I've read on the subject do suggest that improvements come in spurts rather than consistently, and this is probably how it is for now.

Sasha has quite a few good phrases now, even if the language isn't all that clear - including 'there he/she/it is' and '1-2-3-wake-up' if we're pretending to sleep. 'home sweet home' is my favourite phrase of hers though, I love to hear that. I did laugh a lot when I went to collect her from nursery on Friday and they said she had resolutely refused any tea, pushing it away (something she has eaten happily several times before!) but instead had sat there singing 'twinkle,twinkle,chocolate bar' (instead of little star, obviously). She does that at home also, generally at the top of her voice, and that's another thing that always makes me smile. When home last weekend she happily sang 'happy birthday' to her nana, and even quietly went and got the bag of presents to give to her of her own accord! The fact she wanted to open them may have had something to do with it though....

I need to go and do some more reading now, in preparation for our next meeting with the paediatrician (lunchtime on Thurs). I have in my mind something about PDD and how that might be Sasha - here I'm copying directly from the NAS website...

A dad once observed that his son didn't have autism but PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified. "I just wish he had something I could pronounce," he added wryly, "something someone has heard of. " Such exasperation is understandable given the somewhat cumbersome and commonly misunderstood acronym, PDD-NOS, which describes a specific pervasive developmental disorder.
A child may be diagnosed with PDD-NOS if he or she shows some behavioural features of autistic disorder but does not meet the full criteria. All of the listed PDD are part of a spectrum of overlapping conditions. To illustrate this, a child may begin with a diagnosis of PDD-NOS, develop more autistic features with age, and be re-diagnosed with autism or another pervasive development disorder; conversely, a child with autism may improve and be re-diagnosed with PDD-NOS.

As Sasha does seem to recognise and show emotion, and can interact very well with people she doesn't know all that well (when it suits her), I'm wondering if this is how she may be diagnosed. My worry at this stage is still that Sasha is not 'bad' enough to get help which she may well need desperately when starting school, and I'll do everything I can to make sure that start will be as smooth for her as it was for Tamsin.

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So, a long time again since the last post - not unusual in the world of blogging from busy mums I'm guessing.
There has been so much I've wanted to write about, but never really feel I have the time to do it - in fact, I never really feel I have the time to do anything at the moment, I feel constantly pressured about everything there is to think about and do!

Had another lovely weekend away, with old friends, and all went fairly well, apart from the occasion when Sasha decided she wanted to leave the park early, before everyone else was ready to. I can imagine other people thinking 'why don't you just make her wait', or 'try and distract her' but sadly it's just not that easy - once she's made her mind up about something, that's it and there's no amount of persuasion can work. In this case she had just walked off and kept going, barely looking round, and if I hadn't followed her she would have just kept on going anyhow. There would have been no point picking her up and coming back, as that would have led to a tantrum - not particularly what I wanted on Mother's Day! Restraining her is one thing guaranteed to distress her. It may be true that that is similar for a lot of toddlers, but the difference is that with most others you can talk them round, explain it and offer distractions etc, but with Sasha once the mood is upon her there is no way she would listen or be reasoned with, or learn from the experience.

Having said that, I have of course plenty of experience of Sasha's moods being 'up and down' - she can seem inconsolable one minute and then be her usual happy, funny self the next. The main problem with that is the inconsistency and the not knowing what exactly is going to upset her. I can see Tamsin struggling with that too, although she is learning (we all are) some of the things that will set Ssaha off - being shouted at for example, or being told no!

I had a meeting with her nursery this week to update her IEP (think that stands for Individual Education Plan - something done for Special Needs children but maybe also other children with learning 'challenges') and it did dampen my mood slightly (was on a high after the lovely sunny, warm weather). They are very good, and helpful, and pro-active, but they said her behaviour has become more 'noticeable' now she's in nursery for 2 whole days, and following a more structured day. They did kind of floor me by asking for my help/advice on how to deal with Sasha when it came to calming her down from the 'flashpoints' (as they called them, quite a good description I thought). It was then I realised just how much time I spend trying to avoid getting to those flashpoints in the first place. It can be a bit like walking on eggshells, but I think I'm so used to it now that it doesn't stress me out all the time, only on her particularly bad days where nothing is good enough for her and she doesn't really know what she wants herself, despite me offering everything. I make sure, for example, that she is constantly topped up with food and water, as being hungry or thirsty is something I've noticed will definitely affect her mood. But it's so much more than that, and very difficult to explain. I don't spoil her as such (well no more than I do Tamsin!), and I don't let her get away with any deliberately naughty behaviour, but then she is rarely deliberately naughty, and doesn't do anything with malice. The 'Naughty Step' idea just wouldn't work for Sasha because at this stage, however much I explained it, she just wouldn't 'get' the concept. But I can't help feeling that most other parents will just look at me and say I'm not being strict enough. I know I'm not a strict mum, but I hope people see that Tamsin is growing up to be a polite, well-behaved little girl anyway; I think it's somehow ingrained and to do with genetics in a similar way to autism!

Spoke to another mum of a child with Aspergers recently, and she did say how you have to develop a thick skin - I really do have to accept that people will be disapproving and leave them to it. Of course we have lots of great support and good friends which is lovely. I read a great saying in one of the books I've been lent - 'those who mind don't matter and those who matter don't mind'. Think that will have to become my mantra!

So off now to make a million phone calls (so it seems) to chase - for the actual written confirmation of the diagnosis (not yet landed on our doorstep), speech therapy information (when and how much), information on various courses and groups and see what I really need to be doing to help Sasha - and us as a family.

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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.


For Day 1 read: A is for April and Autism Awareness

For Day 2 read: AAA Day Two

For Day 3 readAAA Day Three

For Day 4 readAAA Day Four

For Day 5 of our story please read: AAA Day Five





1 comment:

  1. These posts are so useful for someone going through these early stages. I feel like my friends think my boy is just naughty but I can (mostly) see the difference between naughty and meltdown. Thank you

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