Sunday, 9 February 2014

ADOS day

So we had a weekend which was somewhat 'normal' in the context of anxieties, jealousy and general behavioural issues. I was attacked by a pillow several times and the constant repetitive moaning just confirmed why we refer to her as Duck. We sailed through sons party which went well, but as soon as the party was over, the complaining started. Duck wanted presents, it wasn't fair. Duck wanted a new bed, just like sons. That wasn't fair. Duck wanted to go and do the wall climbing experience with him. That wasn't fair either. Duck forgot that she is terrified of climbing walls, high ropes and everything else. She just wanted what brother had, and more.

Then later that evening Duck hit total meltdown.  She was trying to do a puzzle whilst sitting on the sofa next to her dad. Dad shouted at the tv because hr was watching sport (his team were losing as usual!). Duck kept shouting at him to 'Shut up'. She was so rude and agressive but we both ignored her. After a few episodes of yelling at him to shut up, duck started punching him. This made a rare change.  It was interesting to see how she was agressive towards him. She punched him several times, well over a dozen.  This was then followed by a huge meltdown,  packing bags, trying to leave home and trashing her previously tidy bedroom. She even left a note saying she was off to find a new home where she was wanted.  It took over an hour of tantrums before I managed to calm Duck down enough to get her relaxing in the bath. I can only hope she behaves like this on Monday morning.

Monday is looming and Duck has her ADOS (The very old autism assessment diagnosis) in the morning. Duck doesn't want to go, and I am extremely concerned as Duck can mask almost all her autistic traits for upto 7 hours a day whilst at school. I don't really see how she can be identified as autistic within a 2 hour session. Duck makes good eye contact, Duck communicates well and Duck has good social skills. On the surface.

I have evidence of so many autistic traits its unbelievable. I have photos of her lining cars up, matching colours on Kerrplunk, sitting in baby seats. I have video recordings of her attacking me because I wont go to town to buy sweets, I have voice recordings and witness statements to point out her autism traits. I have her brown owl confirming she tends to stay 'outside' the group a lot, school confirming they have seen issues in change of routine and a friend coming with me to back up everything I say. She commented today that Duck is getting worse. Its no surprise to hear that someone else sees this. She is struggling socially, she is struggling academically and her anxiety levels are through the roof. She is worse. Much worse. I dread friends coming over and hate going to visit places. Duck just doesn't cope and it always ends in disaster and often us leaving early.

Its commonly accepted now days that a lot of autistic children can mask their symptoms whilst at school and explode at home. Its also commonly accepted that a lot of autistic children especially girls don't score enough points on the ADOS to be diagnosed correctly. Its also recorded in the NICE guidelines (National Institute for Health and Care Excellence) that an autism diagnosis should not rest on the ADOS test alone. This means they should listen to me. They should hear my point. They should accept my pictures as evidence. They should accept the statements from others. They should. Shouldn't they??

These are the NICE guidelines for an autism diagnosis procedure..

Children and young people
The following should be included in every autism diagnostic assessment for children and young people:
  • Detailed questions about parents or carers' concerns and, if appropriate, the child or young person's concerns.
  • Details of the child or young person's experiences of home life, education and social care.
  • A developmental history, focusing on developmental and behavioural features consistent with the International Statistical Classification of Diseases and Related Health Problems (ICD-10) and the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-5) criteria (consider using an autism-specific tool to gather this information).
  • Assessment (by interacting with and observing the child or young person) of social and communication skills and repetitive and stereotyped behaviours, including sensory sensitivities, focusing on features consistent with the ICD-10 or DSM-5 criteria (consider using an autism-specific tool to gather this information).
  • A medical history, including prenatal, perinatal and family history, and past and current health conditions.
  • A physical examination.
  • Consideration of the differential diagnoses (see NICE clinical guideline 128, recommendation 1.5.7).
  • Systematic assessment for conditions that may coexist with autism (see NICE clinical guideline 128, recommendation 1.5.15).
  • Developing a profile of the child or young person's strengths, skills, impairments and needs, including: intellectual ability and learning style, academic skills, speech, language and communication, fine and gross motor skills, adaptive behaviour (including self-help skills), mental and emotional health (including self-esteem), physical health and nutrition, sensory sensitivities, and behaviour likely to affect day-to-day functioning and social participation. This profile can be used to create a personalised plan, taking into account family and educational context. The assessment findings should be communicated to the parent or carer and, if appropriate, the child or young person.
There is a lot of information to absorb for just a 2 hour assessment. The evidence I have is overwhelming, however, the way Duck behaves on the day will have a huge impact on the outcome. Duck is so compliant at school and in other places, especially when I am not there.
Don't misunderstand me, I don't actually WANT Duck to be diagnosed as autistic for me. I NEED Duck to be diagnosed for herself. She needs support. She needs more understanding of how everyday life affects her. The current expectation is that Duck is a Neuro Typical child, and behaves in a similar way to any other child. This is because she has masked everything so well. But Duck is not Neuro Typical. She doesn't behave the same as her peers. She finds keeping up with them hard. Really hard and this is why our friends can see her getting worse.

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