To start, I have chosen a poem. I love this poem.
The misunderstood child by Kathy Winters
I am the child who looks healthy and fine. I was born with ten fingers and toes. But something is different somewhere in my mind, and what it is, nobody knows.
I am the child who struggles at school, though they say that I am perfectly smart. They tell me I'm lazy, can learn if I try, but I don't seem to know where to start.
I am the child that won't wear the clothes which hurt me or bother my feet. I dread sudden noises, can't handle most smells, and tastes -there's few foods I eat.
I am the child that can't catch a ball, and runs with an awkward gait. I am the one chosen last on the team, and I cringe as I stand there and wait.
I am the child with whom no one will play - the one that gets bullied and teased. I try to fit in, I want to be liked, but nothing I do seems to please.
I am the child who tantrums and freaks over things that seem pretty and small. You'll never know how I panic inside, when I am lost in my anger and fright.
I am the child who fidgets and squirms, though I am told to sit still and be good. Do you think that I choose to be out of control, don't you know that I would if I could?
I am the child with the broken heart, though I act like I don't really care. Perhaps there's a reason God made me this way? A message he meant me to share.
For I am the child that needs to be loved, and accepted and valued too. I am the child that's misunderstood, I am different, but look just like you.
Not all, but so much of this fits Duck.
We have lots of issues with uncomfortable clothing, wet clothing and itchy clothing. Many of our friends have witnessed Duck reacting to certain stimuli, from a few drops of spilt drink to odd smells and itchy clothes. Duck had an assessment for sensory issues a few weeks back. In the waiting room for her assessment, she spilt her juice over her clothes. This led to a huge panic attack/tantrum both in the waiting room and during the appointment. The assessment ended with the Occupational therapist saying 'it seems fairly obvious what the issues are'.....
Until today, we have always kept a lid on her clothes issues in most places. There have been a few incidents of Duck being unable to don her brownie uniform over the years, but otherwise as far as uniforms are concerned, we have managed to keep things working. We use a lot of distraction, encouragement and bribery, but its gone well.
Today did not go well. Duck was in a good (but anxious) mood this morning. She complied with her normal routine, had a bath, got dressed into her uniform...then got undressed, back into pyjamas! She was crying and scratching herself all over saying the clothes were itchy. We carried out the occupational therapy as we do 5 times daily and hoped it helped. I encourage Duck to try her uniform on again, which she did, but removed it immediately, again crying and scratching. I calmed her by saying that we could take her clothes into school and have a chat with them about it all. Pacified by this, she agreed.
We got to school and the first person I saw asked how Duck had been. I replied saying this morning was not good for her and she wouldn't get her uniform on as it was itching too much. I was astounded at the reply. I was told "Oh she is really playing you up!". NO! No, no and no! This is not a child playing me up. Sure, she can and does have times, but its obvious when she is playing up and when she is really distressed. I managed to stay reasonably polite! I told her she is not playing me up and she has several sensory issues which affect her and today was a day she was struggling. Then I walked out of the office and back to my car where Duck was waiting, refusing to get out. That attitude was exactly what I was worried about. There is a huge difference between a child 'playing up' and a child struggling, they need totally different handling too. The SENCO appeared and I explained what was happening with Duck and what had just been said to me. To say I wasn't happy is an understatement. I told the SENCO that if Duck was going to be treated with the attitude of 'being difficult' that I would not be leaving her in school that day. Thankfully, the SENCO agreed that trying to tell Duck off or punishing her would only serve to aggravate the issue and we managed to get Duck into school. I got a call later to say it had taken a while, but Duck was in uniform and in class sometime around 9.30 and that she was settled -thankfully. 9 days left of this school year...
As far as everything else goes, CAMHS have failed to diagnose Duck with autism. The lady who assessed her has left and can't explain why but she diagnosed 'social communication difficulties and anxieties'. On looking at the assessment, Duck scored 9 out of 10 in the ADOS test which gives a clear autism diagnosis. This diagnosis has been over ruled, apparently by the impact of anxieties. Oddly the ADOS includes anxiety as part of the assessment as its known to be displayed in the vast majority of autistic children. There are 3 options for anxiety in the test. Firstly no signs, secondly, mild signs especially at the beginning of a new part of the test and thirdly high anxiety throughout the test. Bearing in mind the ADOS score has been over ruled due to Ducks anxiety levels, you would be right to think that Duck was graded with the third option, of high anxiety....but no. Seriously! Duck was graded as having mild anxiety during the test. So the test was clearly indicating autism with mild anxieties. Yet the test result was over-ruled due to high anxieties??? And CAMHS have been unable to explain why as the person has left and nobody else can explain other than to say how experienced she was.
So now we have a GADS test showing highly for Aspergers, a WISC test confirming concrete thinking, poor vocabulary and reasoning, preoccupation with specific rituals and routines, a BECKS youth test showing moderately high anxiety and anger, an ADOS test showing clear autism, some sensory processing issues. All of these point at autism, yet no diagnosis within CAMHS.
We have now been referred to the NHS Patient Advisory Liaison Service to see what they make of it all!
Finally for now, the Educational Psychologist visited Duck. He ran a test around Ducks literal thinking which is an area school and I have different views on. I claim that Duck takes everything literally, doesn't get most jokes and doesn't pick up on sarcasm. School say she is fine in all areas. So, the test consisted of around 20 questions and each question had a multiple choice of picture answers. An example is the question was 'Where am I if I am stuck in a traffic jam?' The four pictures were an empty road, a road with a little traffic, a road with a traffic jam and a road with a few cars, a big jar labelled 'jam' and a jam spillage spread over the road. Duck chose the jam one. In fact, out of the 20 questions, Duck chose 19 wrong answers. She took the literal meaning in all but one. I hope by now, the SENCO (who has worked directly with Duck for 3 years) has got over the shock!
Days like that remind me that this is all coming together, slowly, very slowly....
Finally, here is a link to 15 minutes of a radio 4 program called 'All about the mind'. Hear you can listen to a mother describe her daughter and the battle she is having to get her child diagnosed and therefore supported. She is describing our situation so well, it could be me in that seat. The only difference is I have a private diagnosis. Hear why she has chosen not to go down that route. Then hear what the professionals say about the autism assessment for girls. Its an interesting listen.