Yesterday’s guest post highlighted difficulties that many have found shocking. There is one element, however, that she has reflected on more here: that of being a parent when you are “on the spectrum” yourself.
Further to the “Surprise Child Protection Meeting” incident where I went to a meeting expecting ‘help’ and after arriving found out it was a full CP meeting… it made me think. One of the questions was “How does having Asperger’s impact on your ability to care for your children?”
I thought long and hard since that day, really what difference does having Asperger’s make with regards to my ability to engage with Professionals? Is it right that I was criticised for the way I responded to professionals, when in fact my responses were triggered by the way I interpret and process what is going on around me?
It means that:
- I have a strong sense of justice I do not like the truth to be twisted, exaggerated or lied about.
- I have no idea why you think I am not engaging but what it is probably related to, (as well as a good “reason” to get us on CP) was my lack of social skills, which do not mean I am not engaging.
- I am not making small talk, I am not speaking the same language, I am factual and to the point, I am not a natural speaker.
- I probably ask more questions – which often equates to people presuming I am questioning their expertise or professionalism.
- I will work round the clock and burn myself out looking for an answer.
- I won’t answer open questions in the expected way, I will stumble and try to grasp what the question asker is indeed asking me.
- I will take longer to process and longer to decide how to word what I am saying (ironically trying to come across in a none offensive way), but that can be mistaken for lying/aggression/anxiety.
- l take you seriously and will expect that you stick to your promises, as I will mine.
- I might cut in at the wrong times during a conversation. It is not intentional, not at all and is against my values to be rude.
- I would do absolutely anything for my children.
- I share the same neurological wiring as them and speak the same language.
- When the children come to me with the idiosyncratic ways, I will decipher. I will read notes, watch body language (I can read autistic body language, not neurotypical so much).
- I love beyond expression. I feel so deeply that I will never be able to express in a way another person can “see”, unless they are able to first travel in my shoes with my unique view of the world.
- I “should” be – (I AM?) entitled to reasonable adjustments.
- I should be entitled to written communication to help and aide with auditory processing.
- I should be given an agenda before meetings and the room “should” be sensory friendly.
- My social skills should not be judged as engaging or not within the rigid parameters of neurotypical social skills.
- It should mean that a more literal approach is taken when using language and a very direct approach is practised.
- My sensory world is different from others’ sensory worlds. I process everything, nothing goes through a filter (I hear, see, smell, touch, taste so intensely).
- I feel emotions very intensively.
- My world is overwhelming and my only respite is temporarily shutting down or retreating into myself.
- I need professionals who will work with me, with my strengths, not exploit my differences and decide they are ‘wrong’.
- It also means that all the above answers are ‘wrong’, as they are not looking for these answers – only answers which mean I have to change.
What it really means – that I spend hours, after and before trying to think of any eventuality and an answer, and that I spend hours afterwards processing what happened, what I said, what they said, their body language, any hidden or double meetings.
I spend hours wondering if these professionals will, once again, decide that I am not “engaging” and are judging my social skills as ability to parent and my intelligence. It means I leave most meetings completely sensory, emotionally, cognitively and mentally overloaded. Most of all it means that I need to get the understanding for my children, our children that I have never had for myself.
I have heard many times from professionals “Oh, but we all have things we don’t like, that we have to do”. The above are not preferences, I have preferences, I prefer purple to pink. These are necessities, these are things I cannot tolerate – or can tolerate. Sitting looking towards a window with the sun shining in my eyes, is like having some shine a bright torch in each eye, I can see it for hours afterwards. I cannot change the way I process the world, I can merely pretend to.
Please share this post widely – especially within groups that have professionals that may like to understand more about the perspective of a parent with Asperger’s
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More related information is below:
Please see here for a free book that describes disability discrimination.
Please also know that there is NICE Guidance that describes that:
Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism, which should include:
- the nature and course of autism
- the nature and course of behaviour that challenges in children and young people with autism
- recognition of common coexisting conditions, including: mental health problems such as anxiety and depression physical health problems such as epilepsy
- other neurodevelopmental conditions such as attention deficit hyperactivity disorder (ADHD)
- the importance of key transition points, such as changing schools or health or social care services
- the changing needs that arise with puberty (including the child or young person’s understanding of intimate relationships and related problems that may occur, for example, misunderstanding the behaviour of others)
- how to provide individualised care and support and ensure a consistent approach is used across all settings
- skills for communicating with a child or young person with autism.