Engaging with Professionals when you are a Parent with Asperger’s

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

Like this blog?  To see more of our blog posts please click here

 

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
    sleep problems
  • 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.

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7 thoughts on “Engaging with Professionals when you are a Parent with Asperger’s

  1. I don’t think the problem is restricted solely to parents with Aspergers. Any parent who suffers with mental health problems are at a disadvantage. I was told by a headmistress that as a result of my GAD I was psychologically harming my children!

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  2. Thank you to this parent who has shared such an unfair and infact discriminatory experience. It is heartbreaking that this is not an isolated experience of the ‘system’ and ‘professionals’ who are supposed to help our children and our families.

    I am also a Mother of multiple children (4 boys). Three of my boys have neurodevelopmental conditions including Aspergers, ADHD and sensory processing difficulties.

    I am a Mother with Aspergers.

    I have tried to use my diagnosis as a strength… especially in meetings about my children… especially when ‘professionals’ claim my child is ‘fine’ or they speak as though they know my child.

    My diagnosis gives me the confidence to stand strong and advocate for my boys. ‘Professionals’ don’t really have an answer when I articulate my childs world into words from a perspective they cannot claim to see from. I have stated in a meeting “unless anyone else in this room shares my childrens neurology, as I do, then I feel that I am their best advocate, let me help to explain why they ‘look’ fine, let me help you to understand what they are actually experiencing… I appreciate you see a child looking ‘fine’ but… “.

    Aspergers parents are their childrens best advocates. ( Whilst I have no doubt NT parents are brilliant advocates… but I wonder… does it give us an advantage to share our childrens neurology?).

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  3. I’m an autistic autism mum. The professionals I meet are supportive and lovely, but have no idea how we function as a family. The Ed Psych says I am meeting the children’s needs exactly, but because we are outside the system in that we home school I am constantly told we must trust a system that doesn’t speak our language to be funded or access our stat rights…But I must conform to them, and trust them, even though by not understanding me they are showing they don’t understand my children’s need either.

    I am confident in myself, my diagnosis and my right to walk to the beat of my own drum where this matches my children’s needs. I need professionals who understand developmental and thinking differences are not an illness or a mental health issue in their own right (although they do come with the territory they are not a must have). I teach my children neuro-typical awareness,that neuro-typical is not less, just different, but have to constantly remind professionals that they do not have the only correct world view. That their insensitivity to nuances in speech and sensory experiences does not make them weaker, just different. We constantly accommodate their needs in meetings. Their over reliance on auditory processing, when a diagram or reports circulated beforehand would be so much easier.

    I try my best to be tolerant and understanding of their needs. I express my apologies when I might hurt their feelings by being unknowing of their boundaries, by treating them as I feel is appropriate rather than their needs require.

    Ok… I’ve wandered. But why can’t we just treat each other with compassion and patience? If we treated cultural or ethnic differences the way professionals sometimes treat people with a different (but not less functional) developmental neurology it would be legislated against.

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  4. Yes you most definitely are entitled to reasonable adjustments. And I could have written this article myself. The problem is, they are not willing to learn in my experience. You can quote and cite and provide the evidence of what they are meant to do, they just ignore it anyway.

    “How does having Asperger’s impact on your ability to care for your children?”

    Is a horrifically discriminatory question – but I’ve had very similar myself. It’s simply unacceptable. Answer by pointing out how you having Asperger’s benefits your children. Why should they get to assume you are a poor parent.

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  5. Keep on going fighting the good fight. I totally empathise and agree5with your perspective. I was ambushed on a checkup meeting at school (which I requested) by 5 people who wanted to expelled my aspie daughter on the spot. I am starting a book about this . Aspie mum x

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  6. I have only realised in the last 6 months that I too have aspergers (I have two boys with aspergers as well). This really resonated with me. I always wondered why I struggled in official meetings, now I know why! I find your blog incredibly helpful. I still feel as though I am stumbling about in the dark most of the time and your blog is a little light in the darkness. So thank you x

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