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Alexithymia and interoceptive difficulties at school?

NAS78726

My teenage daughter is struggling at school and this is compounded by a lack of understanding of her inability to feel or describe her emotions.  I think she has alexithymia - an inability to describe her emotions, which is combined with interceptive difficulties that mean that she doesn't recognise the physical feelings that go with her emotions.  She does not feel hot or cold, hungry or thirsty.  The upside is that she doesn't really get anxious in the traditional sense as she doesn't recognise the increase in heart rate / butterflies in the stomach!  Because she does not express any negative emotions at school, they assume she is fine.  Her grades are fine academically.  So very little support.  The only emotion she consistently names is confusion!  When she doesn't understand teachers (due to being very literal) she gets very confused about what she should be doing, despite being very bright.  But struggles to communicate this to her teachers as she cannot describe what she is feeling.

I feel like we are going round in circles - her ASD diagnosis was literally "she meets the criteria for ASD".  No report.  and other autistic students do not seem to be so severely affected by this - including my other daughter.  Who do I need to consult to get a better understanding of just how much these issues affect her so school can help more?  At the moment they think I am making it up!

  • Hello ,

    I'm sorry to hear that your daughter has been struggling at school. 

    You may find the following information useful. 

     The following page contains a lot of helpful information about education for a child with an autism: 

    https://www.autism.org.uk/advice-and-guidance/topics/education 

    This includes information regarding getting extra support for your child in their education setting. 

    You may want to contact our Education Rights Service who provides information, support and advice on educational provision and entitlements. Please see the following link for further information: 

    https://www.autism.org.uk/what-we-do/help-and-support/education-advice-line 

     If you need support with an appeal against a decision about a child or young person’s educational needs, you might want to contact our Educational Tribunal Support Helpline: 

    https://www.autism.org.uk/what-we-do/help-and-support/tribunal-support-line 

    All the best,

    ChloeMod

  • in reply to DeSpereaux

    Sometimes it can be the case that we attach negative meanings to words, and proscribe a negative association to them, why would we want to bring up word that makes us feel bad? The solution is to learn more words, learn how to use them, and then we can talk about our problems without feeling bad.

    When I was a kid I used to hate using the word ‘tummy’, because of all of the interactions that I had with people who used it, I had to learn the word ‘stomach’ before I could talk to people about digestive issues, even then I had to be careful not to get the wrong interaction from adults aka., touching.

    The majority of the words I used in childhood were a faux pas to me, because the earliest words I used were usually imperative in nature, but I didn’t want them to be. As an agreeable and open child I did not want to fight and debate my mentors and peers; so instead I said nothing until I was sure that my words could be used to successfully evade the wrong interaction.

    I used up so much energy trying to ward myself from unwanted feeling, that my success in school suffered, I spend two years not being able to see long distance as a child, because I had developed shortsightedness and did not know how to convey it to adults in a ‘safe’ way. I only developed the grammatical basics in university as I had access to resources without oversight, no one realised I had learning developmental difficulties, I was eyeballing-it the whole time.

    This is what it is to mask: It is important to expose Autistic children speech and reading and writing from an early age, because we can be effective at looking passably-neurotypical. But we are not mature enough, at a young age, to know that masking takes energy that could be better used for development of competency. This is why the parents of autistic children need to be especially vigilant of any of our masking, camouflage or compensating behaviours.

  • I had this problem for the entirety of my childhood, I found that reading fictional books that I had chosen to read helped; my exposure to vocabulary and grammar was key to my reasoning and rhetorical competency, the more I honed my interest, the more competent I became..

  • Bumping this thread so hopefully you can get a response from someone with more experience of this.

    (edit:fixed typos)