I am very concerned about the paediatrician appointment on the 9th of July. Not necessarily for the reasons some may think.
It is difficult as there are so many reasons why her difficulties may be overlooked.
- Firstly girls on the autism spectrum are often misdiagnosed or not diagnosed as they present differently to their male counterparts, as generally girls are better in their interactions and can mimic social situations better in order to fit in.
- The fact that the ASD I believe Dinky has is PDA, which is not widely recognised
- That I seem to get prejudged very quickly by doctors and have been my entire adult life (I look young, I do not dress very ‘motherly’, and if they ask about my mental health or my history I become overlooked as that poor abused kid with mental health problems)
I guess I am not looking forward to having to fight a professional just to take dinky seriously.
When I first realised there might be an issue I tried very hard to prove dinky wasn’t on the autism spectrum. First of all I knew a lad who had recently been diagnosed with ASD. I, at the time, didn’t believe there was anything majorly different between him and Dinky. I actually thought the first paediatrician was right when they said he didn’t have ASD, as he and dinky were alike in many ways. His mum actually got rather annoyed with me on a number of occasions as I said Dinky did a number of the same things. However I had to apologise as I used that to mean that there was nothing different about her son, rather than acknowledging that this could mean that there was something different about Dinky (however this still would not have been enough to save our friendship as she believes that her son is autistic and it is woe is her, other people can not possibly go through what she did in having a high functioning child with autism). Looking back I should have seen it then.
My other problem was I did not know enough about Autism. My only real experience has been 2 boys with classic/Kanner’s autism, and there was a girl in my 6th form college with Asperger’s. I wasn’t aware of the broadness of the autism spectrum. I had certainly never heard of PDA.
I went to the library and got out books on the autism and Asperger’s. I read and read and read! The more I read the more I found it related very much boys. I looked online in between my reading. I came across something on autism.org about women and girls on the spectrum. This made so much sense. The penny dropped, but something was still amiss. Dinky was very sociable and not just in the imitation of others. It was then that I was introduced to PDA. BANG! In that instant all the jigsaw pieces fell together.
Now I am realising that the Paediatricians and other clinicians are more used to the male presentation, and the more usual presentations of autism. How on earth am I going to show that the research has been done and girls with less severe presentations do exist, and that PDA not only exists, but can be seen in Dinky if they look hard enough?
I feel it is a mammoth task. One that is hard for me to take on because I still look young, although I have thought about buying an outfit that is more ‘motherly’ as I still think turning up in jeans, a hoody and air force 1’s, may just take the edge away from the point I am trying to put across. Comfort is a luxury I can not afford if it is at the expense of Dinky. I may have to research more on this.
I can’t work out if dinky is now showing more autistic traits just recently, or if I was just in the midst of a turbulent time and didn’t see it, or that I was just so ignorant of autism and its different manifestations, that I didn’t realise what it was she was doing was not typical behaviour.
Maybe it is a combination of all 3. Maybe now that I let Dinky have more control and things are slightly easier outside if the trigger times (such as getting ready for school and bedtime), she is spending less time being outwardly PDA and is showing more of the autistic side of the condition.
I just want what is best for Dinky. I have found that PDA strategies work best for her, so we need everyone else to get on board and the only way to do that, is to make sure that we come away with the right diagnosis.
I have mentioned this before, but it is the not knowing what they believe exists and doesn’t that is the most difficult. If dinky were a boy and presented in a typical high functioning ASD way then it would not be a major worry. I would be happy to allow the Paediatrician to make their own judgement call, sit back and worry only for how my little one gets on at the appointment. But bear in mind that males with a typical presentation are picked up a lot quicker by schools.
This can be seen with the lad that is one year older than Dinky who was recently diagnosed with HF-ASD. They went to the same school and had the same senco, however you couldn’t have more different approaches to how they were treated.
Had a major life disturbance in his father walking out and letting him down regularly
Had a major life disturbance in the change of scenery in form of housing and missed the person we lived with
Boy- intervention from school-
Dinky-intervention from school-
Boy- surface autistic traits (from what his mother said to me and from knowing him for 3 years)
Not bothered about socialising, unable to share, had very few friends, inappropriate interactions with adults, lack of understanding of emotions, lack of interest in other people’s interests, clumsy, seemed at times to be unaware of people around him, easily absorbed in one activity, strong need for routine, lack of safety awareness, behind in verbal communication, refusal to do school work, behavioural outbursts, sensory issues. (However he displayed these in a more obvious way)
Dinky- surface autistic traits
Inappropriate interaction with (peers if you look properly and) adults, lack of safety awareness, running when stressed, behind in verbal communication, refusal to do school work, behavioural outbursts, sensory issues. (not very obvious apart from the swinging from adults arms or hugging people she doesn’t know, refusal to do work resulted in the most severe behavioural outbursts).
Boy- intervention from school-
16 hours 1:1 TA input a week His own behavioural system
Educational Psychologist Contact book (filled in properly, in full EVERYDAY)
Referral to paediatrician Speech and language input
Visual timetable just for him Social group
Dinky- Intervention from school
Play therapy contact book (laughable content)
Own behavioural system
So some very similar issues that were not picked up or given intervention by the same school. Obviously all children with ASD are different, the boy presented as more typical HF-ASD. It is just amazing how differently boys and girls are treated. Dinky’s behavioural issues were put down to being an emotional girl who was too young to express her emotions in the right way. The boy’s behavioural issues were looked into, and his social interaction was looked at more, and he had all the intervention he needed.
With his TA he produced lots of work, and quality work. He learned loads and his behavioural outbursts decreased.
Dinky was pressured into doing more because she was seen as awkward and defiant which meant she had done very little work in the 2 terms she was there. Being pressured exasperated her behavioural issues and has made it much worse and made her less likely to do work.
In fact the Senco said once “It is not like she is autistic” (If we get any type of ASD diagnosis I will be sending a copy of it to her first school!)
Seeing as the first paediatrician said the boy was unlikely to have ASD, what will they make of dinky? It is the same child development centre, and I am worried.
I will be researching a lot more, and logging behaviour more and more over the next month. I intend to prove beyond a shadow of a doubt that Dinky needs a diagnosis which encompasses all her difficulties and spells out her needs.