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School advised daughter likely autistic but should not get her tested

Swimswim

Hi,

I'm hoping to hear other people's advice and personal experiences please. My daughter is 7 and is showing more and more autistic traits. She struggles socially at school,  preferring to spend time on her own. She cannot cope with changes in routine, and it results in massive meltdowns if there are the the tiniest changes. There's more, but I'll keep the post brief.

At a school SENCO meeting about her sibling the SENCO mentioned that my daughter could be Autistic, but advised that getting a diagnosis may be harmful for her. She is incredibly intelligent, working at roughly the level of an 8-9 year old despite only bring 7, and the school SENCO was concerned that a diagnosis would only hold her back in the future if she were to face stigma because of it. She explained that my daughter clearly does not need any academic support due to her autism, and she did not feel that she would get any benefit from a diagnosis with her emotional and social needs.

I would love to hear other people's advice and experiences please, as parents or people with Autism. Thank you

Parents

  • Your child may not require much support in their education at present, but that might not be the case in the future. Secondary school in particular places much more social strain on autistic children than primary school does. If a child is not getting support then social strains can affect their educational progress. Extra time in examinations and other accommodations at GCSE and A-level, not to mention degree-level, can make the difference between success and failure for autistic people.

    The level of social pressure can have very detrimental effects when the ability of an autistic child to cope with it is exceeded. I was an apparently sociable, happy and contented child until starting infant school at four and a half. The sudden exposure to a large number of other children and being away from my family for most of the day resulted in three months of selective mutism. My ability to cope with social change and pressure had been exceeded. I ended up being academically successful and after a number of degrees worked in biomedical research at universities all my career. However, as an undiagnosed autistic person it was very difficult. It would have been much less difficult had I known and had I had appropriate accommodations and support.

    In short, I think that the advice you have been given, though well-meaning, is not in the long-term interests of your child. My own daughter was diagnosed with ASD at 19 when at university. She has told me that she thinks that without the accommodations she received she would probably have dropped out of her course. In the end she gained a first class chemistry degree, had the highest marks in her year and received a prize from the Royal Society of Chemistry.

  • in reply to Martin

    That’s really interesting Martin. My youngest developed Selective Mutism on starting school - but sadly a lack of timely and effective support meant he experienced Selective Mutism throughout his educational life. So hard for him - and heartbreaking to watch him struggle in that way. I’m happy for you that it was only for 3 months - it’s wonderful that you were able to overcome that. 
    I agree with your comments - very academically gifted autistic pupils can achieve at a high level - but the cost of not having support and understanding for their more complex needs as autistic people can be devastating and eventually this most likely will impact on their academic work. When so much of their self esteem is invested in academic success (because they often see it as “the only thing I’m good at”)  the pressure of that can be immense. 
    Our autistic traits are there - diagnosis or not - and not getting a diagnosis does not get rid of the problems we face. There is no advantage to ‘hiding’ from the reality of our autistic traits, and there is great advantage to having a better understanding of our autistic traits and also - so importantly - acceptance of them. In my experience we can only be truly happy if we accept who we are, embrace the positive aspects of being autistic, and practice loving kindness to ourselves when we are struggling with aspects of life that our neurotypical peers find a breeze. 
    What troubles me about this Senco’s comments about ‘stigma’ is that I think it reveals her own internal negativity about autism - and that’s the last thing a Senco should be conveying to the children and parents she is supposed to be supporting. It’s universally recognised that early and appropriate interventions for children with challenges in school is a huge advantage - not a disadvantage, and how can this little girl get help for the challenges she has due to being autistic if everyone is saying she isn’t autistic?! 

    I find these stories so dispiriting - it’s been years since my children were in Primary School and I would have hoped things had got better - but it often sounds as if things may actually have got worse. 

  • in reply to Kate Kestrel

    I had much shorter bouts of mutism up to about seven years of age. My initial long-period was ended by a particular event. I have always had a fascination with animals. The teacher brought into the classroom an incubator and some fertile hens' eggs. When the eggs started to hatch and cheep, I started to talk.

  • in reply to Martin

    That’s wonderful - what a lovely thing to happen! 

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