I’m new to the forum, but felt I wanted to reach out, say hello, but also mainly vent my frustrations a little about what’s happened with us today, and see if others have the same problems.
Our second daughter Sarah (not her real name) has been having some behavioural issues since as long as we can remember. Her main, and most frustrating issue is… well, I suppose the best way to put it is that she has never taken well to being told off or told what to do. When our eldest daughter did a minor misdemeanour, we’d ask her not to do it, and she’d be fine; rarely, we’d have to tell her off a bit, and she’s generally what you’d call a “good girl”, so she says sorry and corrects her behaviour. But with Sarah, she digs in. She starts by making up excuses, often falling back to the line “it’s not my fault” when it clearly is, and eventually escalates to a standoff where she literally refuses to comply with whatever it is you’re asking. Bizarrely, this can be as minor a thing as “can you put your plate in the dishwasher please?” She often expends more effort trying to explain why she can’t do the thing than it would take to just do the thing.
She rarely sits with us at the dinner table and has to choose her own food, meaning we have to cook her choice alongside ours. Even when it’s food we know she loves, she often won’t touch it if she’s not chosen it. And even when we do cook her food, she won’t come when called and instead makes her own way to the table in her own time, often after the food she asked for is cold, when we know she is hungry.
When younger, we assumed this was a phase she’d grow out of. Her behavioural mood switches on seemingly at random, and we thought as she got older it might abate some. But she’s now hit high school, and the behaviour is the same – it looks increasingly bizarre for a child of her age.
We have autism in the family – my brother is autistic; my father and I have (undiagnosed) Asperger’s, and, sadly, there have been vague historical accounts in the dim and distant past of children in our family that stayed hidden at home and were “not talked about”.
However, I never seriously considered Sarah’s behaviour to be attributable to autism. Sure, she had a couple of minor traits that seemed a bit autistic. She loved sorting things when younger, and liked to line up all her toys / teddies in long neat lines. She also finds comfort in watching the same TV programmes on Netflix over and over again. Horrible Henry, Matilda, and when older, Miranda (Hart) and Outnumbered were particular favourites. But socially, she was absolutely fine, making friends and fitting in. She didn’t have any language problems, and has always been particularly fond of role playing social situations with her sister (though Sarah always has to be the one that tells her sister how the scenario will unfold). “Pause Game! You have to do xxx….” she’ll say.
We discussed her behaviour with her teachers, but really strangely, they said she was an absolute angel at school! She’s in top sets now, and as far as we can know, none of the frustrating behaviour that seems to switch on and off so frequently at home is displayed at school.
Then, a few weeks ago we had a lightbulb moment. Whilst reading an article on Asperger’s after some difficulty I myself had at work, I stumbled across a description of a condition on the autistic spectrum called “Pathological Demand Avoidance (PDA) Syndrome”. It was like I was literally reading a description of Sarah – it just fitted absolutely 100% perfectly. There was a link to a 26-question questionnaire called the “Extreme Demand Avoidance Questionnaire” (EDA-Q) which said that a score of 45+ indicated that your child was displaying signs of PDA – Sarah scored 59.
I am really frustrated with myself, especially given that I have some knowledge of autism, that I didn’t discover this condition earlier and make the connection.
There is no doubt in my mind that this is exactly what Sarah has, but we wanted to get a medical diagnosis. Although she’s not displaying signs at school currently, we don’t know if that will change in future, perhaps at college, university or in adult employment, so I think an official diagnosis would help justify putting coping strategies in place should the need arise. Also, I tire when explaining to people about my own Asperger’s of having to qualify the statement with “but not actually officially diagnosed”, which grates on me. (I tried once many years ago, and my GP referred me, saying it would take many months to get seen, but I never heard anything back.)
The NAS website says the first step in getting a diagnosis is to visit your GP and ask for a referral, so today, we did that.
My wife and I took time off to accompany Sarah to our GP. For over a decade we have been building up to this, and at last we’re actually going to take a positive step towards getting Sarah the recognition she deserves, after all those years we’ve been “telling her off” for who she is.
We were seen on time. Approximately a minute and a half later, we were sent out with a piece of paper with a number on for some young person’s peer support charity for “young people in mental distress”.
OMG I am so angry.
We went in, armed with a book “Understanding Pathological Demand Avoidance Syndrome in Children” and a copy of our EDA-Q. We’d prepared Sarah for what was going to be a very stressful appointment, potentially discussing issues that we knew she would be very sensitive about.
We nervously started to explain the purpose of our visit. The GP said, reclining at a 45 degree angle on his chair, “Why do you want to get a diagnosis? What benefits do you think that would give?” We answered as above. He then asked “Does she go to a normal school?” – yes. And then “Is she in top middle or bottom sets?” – top. And then “Has her school reported any behavioural problems” – to which we had to reply “no, the behavioural patterns only manifest themselves at home”.
He then nonchalantly proclaimed “well, you can’t turn autism on and off like that”, and then tore a notelet from a pad on his desk with an advert for this young person’s peer support charity. My wife tried to explain that one common aspect of PDA is that the behaviour can vary wildly by environment, but he didn’t seem to be listening. He told us that was the number to ring if we wanted to try and get an NHS referral, or otherwise we could go private, and then he sent us on our way with instructions to ring the number, leaving us, 90 seconds after entering, with the distinct impression that we were wrong to be wasting his time and we’d come to the wrong person.
A bit shell-shocked, the three of us left without looking at the contents of the leaflet - it turned out to be an advert for a young person's peer support charity for various mental health issues, and nothing at all to do with NHS referrals. In hindsight I should have made an effort to try and get him to discuss it some more, but (Asperger’s excuse time) I didn’t.
So, we’re feeling very down, a bit depressed, but mostly angry. I recall my parents saying that in the late 70’s, they had a massive struggle getting my brother diagnosed – repeatedly being told it must be down to “bad parenting” and not taken seriously. And it literally took the release of a Hollywood film in the 80’s before they could effectively explain to other family members what the problem was. It’s now 2018, I would have hoped attitudes in the general medical profession may have got better?
Anyway, I’m just venting – I feel better by sharing our story, and I was wondering if anyone else had similar experiences or have a view on the matter, or tell us we’re not alone? (Incidentally, I am now in touch with another NHS organisation with which we’re going to pursue a referral.)
Thanks very much for reading, I appreciate it.
Welcome to the forum, Rich.
I'm sorry to hear about your shabby treatment by the doctor. I wish I could say that this is a rare thing, but sadly, that isn't true; getting past the first hurdle of being taken seriously by a GP is a common problem when seeking a diagnosis, whether for a child or an adult. Once at the stage of seeing an expert, I think that things have generally improved, but most front-line staff still seem to have well out-of-date ideas about what autism is, and I've heard from many people who have been dismissed for utterly ridiculous reasons ("spoke in whole sentences"!)
Naturally, I can't make a definite diagnosis, but I was thinking "PDA" right through your initial description before you mentioned it yourself; it is certainly consistent with my understanding of that condition, and some of my own autistic behaviours, especially when I was a child. The EDA-Q is a clinically validated screening questionnaire, designed and tested by experts in the field; it is not enough for a certain diagnosis, but definitely should be treated as indicating the need for a more thorough assessment.
The fact that your daughter's school hasn't noticed anything amiss is not all that unusual, either. Autistic people certainly can't "turn their autism on and off"; however, what those of us with good intellectual skills can often do is to strain ourselves really hard to conceal our autistic traits by analysing people's behaviour and learning to mimic it, or hide in the shadows so that we go unnoticed. At school or work, we're in an "alien" environment, where the social consequences of being seen as "weird" can be frightening for us, so there's a lot of incentive to do this. Once we get back home, in an environment where we are comfortable, the mask comes off - it has to, otherwise we would be crushed by the strain of living like an undercover agent all the time. This is exactly what I did as a child, and I have read many parents report a similar experience with their children. This is fundamental misunderstanding which many people have; the stereotype of autism is still very strongly associated with intellectual impairment and learning difficulties, even though the diagnostic criteria make clear that this isn't the case.
I hope that things go better with the other NHS organisation - under NHS guidelines, you always have the right to a second opinion. Let us know how you get on.
Thank you so much for taking the time to reply - it means a great deal to us, and has given us some reassurance that we definitely needed!
The GP clearly knows very little about autism and lacks recognition that the challenges (and risks) of un/ misdiagnosed (& unsupported) ASC go beyond behaviour that is difficult for other people.
Per Trogluddite's comments, please go back for a second opinion with a different GP. Worth highlighting during the GP consultation the history of people in your family who have an ASC diagnosis as it may prompt the GP to pay closer attention and act on your request.
Your daughter does sound as though she clearly fits the description for PDA.