Daughter recently diagnosed and family member rejecting the diagnosis

Hi everyone. I’m new to the community. My 8 year old daughter was diagnosed with autism and ADHD this week. We suspected she may be on the spectrum and paid for private testing as the wait with CAMHS is up to 18 months where we live. Still, we were shocked when it was confirmed. I guess I had been stressing myself out thinking they would just say her behaviours were down to something we had done or not done as parents. I know that’s crazy, but perhaps I was just trying to avoid reality. I’m at a bit of a loss at the moment waiting for the full report with the recommendations on how we and her school can support her. What’s made it worse is that my sister, who my daughter is very close to, has basically said the person who tested my daughter clearly doesn’t know what’s she talking about and that my daughter is a normal 8 year old who we have now labelled and will make paranoid. Now I'm worrying that what she has said is true. I researched alot before I chose the organisation to conduct the tests and they seemed good as they specialised in autism in girls. Now I am doubting it all. My sister has told her children that my daughter isn’t really autistic or have adhd and so they basically didn’t reply when my little girl told her favourite cousin she was autistic. For me, that seemed like a massive rejection of my daughter who wanted to tell her cousin because she adores him. I really needed my sister to be there to support me and my daughter but it seems she won’t be, even though we have been so close throughout our lives. My sister works in a secondary school and fiercely supports the SEN children she works with. This just makes it so much more difficult to understand why she is rejecting my daughter’s diagnosis. I just wanted to get it off my chest and ask how other people have dealt with their families rejecting a diagnosis in this way? Also, I’m a bit overwhelmed with all the information out there, and how I can help my daughter to understand her diagnosis. Not sure where to start really. Can anyone offer some advice?

Parents
  • The first thing that went through my head is the possibility of your sister having similar autistic "neuro"-wiring (ADHD, Dyslexia and others are all on the Spectrum). I see something in you which feels akin to me and deem that normal. Another thing happening is there's also this amazing amount of hostility around what is and isn't autistic - as if our (autistic) very essence is offensive at the core of "Typical" being. And this isn't entirely off-balance. Society has changed to such a degree that our very motives are at odds. How we feel included or affirmed by another can often be an opposing behaviour / response. What is appropriate for Autistics in a collective might be socially isolating to Neurotypical wiring - and vice versa. 

    She might not be entirely wrong, but it would be better if she could be specific about what she understands to be true. ADHD kids have been diagnosed Autistic when they’re not. The problem is this: ADHD & Autism share 2 things in common, The Monotropic brain and their inability to dull their senses the same as the NT population. These 2 things complicate all sorts, there’s a sense of everything all at once, being overwhelmed and sensory torture (human made elements are far less human-friendly than ever from lights to VOCs, sound quality and petroleum-based fibres) Then there’s the difference that might only be understood with maturity, wisdom and education. They both have a different relationship with time - relating with the moment and eternal 'timelessness' rather than linear. But while ADHD can have an impulsivity and eventually flow with a sort of chaos, the Autistic will completely reject it, and need thoughtful planning - interruptions are our kryptonite. 

    The one not so small difference is Autistics have a difference in communication, while ADHD kids can access their words and appear fluid with communication. Now, it is still exhausting for ADHD kids to deal with Typical social structures. 

    50 years ago our culture had a great deal of respect for careful and thoughtful planning, Kids were outside running wild until bedtime and so culturally, there was allowance and a sensibility for all kinds of beings. It was ok to be more intellectual than social. That is no longer the case. 

    As culture becomes more homogenised and expectations closed around a certain way of behaving which dictates what is and isn’t moral, the young who are different are noticed each time they run against these invisible walls simply due to being on a process where they have yet to acquire coping mechanisms. It has been noted by Freud and others that while all humans can be traumatised into Survival Mode, Autistics don’t create Defence Mechanisms due to a difference in language. Coping might be in the form of living in survival mode.

    We've much further to go in understanding these differences as a society, but from my reading of the last 150 years in psychology, psycho-analysis and philosophy, Autism is a sociological "problem" (the kind with a solution) due to a great deal of change in the 80s.

    The main thing I would seek from a relative who needs to control what is and what isn’t, is to find out if she can properly separate the what is unique to Autistic 'wiring' from the often misdiagnosing which confuses it with trauma. Under the right conditions, Autistic and ADHD potential can flourish. 

Reply
  • The first thing that went through my head is the possibility of your sister having similar autistic "neuro"-wiring (ADHD, Dyslexia and others are all on the Spectrum). I see something in you which feels akin to me and deem that normal. Another thing happening is there's also this amazing amount of hostility around what is and isn't autistic - as if our (autistic) very essence is offensive at the core of "Typical" being. And this isn't entirely off-balance. Society has changed to such a degree that our very motives are at odds. How we feel included or affirmed by another can often be an opposing behaviour / response. What is appropriate for Autistics in a collective might be socially isolating to Neurotypical wiring - and vice versa. 

    She might not be entirely wrong, but it would be better if she could be specific about what she understands to be true. ADHD kids have been diagnosed Autistic when they’re not. The problem is this: ADHD & Autism share 2 things in common, The Monotropic brain and their inability to dull their senses the same as the NT population. These 2 things complicate all sorts, there’s a sense of everything all at once, being overwhelmed and sensory torture (human made elements are far less human-friendly than ever from lights to VOCs, sound quality and petroleum-based fibres) Then there’s the difference that might only be understood with maturity, wisdom and education. They both have a different relationship with time - relating with the moment and eternal 'timelessness' rather than linear. But while ADHD can have an impulsivity and eventually flow with a sort of chaos, the Autistic will completely reject it, and need thoughtful planning - interruptions are our kryptonite. 

    The one not so small difference is Autistics have a difference in communication, while ADHD kids can access their words and appear fluid with communication. Now, it is still exhausting for ADHD kids to deal with Typical social structures. 

    50 years ago our culture had a great deal of respect for careful and thoughtful planning, Kids were outside running wild until bedtime and so culturally, there was allowance and a sensibility for all kinds of beings. It was ok to be more intellectual than social. That is no longer the case. 

    As culture becomes more homogenised and expectations closed around a certain way of behaving which dictates what is and isn’t moral, the young who are different are noticed each time they run against these invisible walls simply due to being on a process where they have yet to acquire coping mechanisms. It has been noted by Freud and others that while all humans can be traumatised into Survival Mode, Autistics don’t create Defence Mechanisms due to a difference in language. Coping might be in the form of living in survival mode.

    We've much further to go in understanding these differences as a society, but from my reading of the last 150 years in psychology, psycho-analysis and philosophy, Autism is a sociological "problem" (the kind with a solution) due to a great deal of change in the 80s.

    The main thing I would seek from a relative who needs to control what is and what isn’t, is to find out if she can properly separate the what is unique to Autistic 'wiring' from the often misdiagnosing which confuses it with trauma. Under the right conditions, Autistic and ADHD potential can flourish. 

Children
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