Nabeelah got in touch with us because she was concerned. She has an autistic 6-year-old whose autism has been obvious since she was very young and who is minimally speaking. She felt that children like her daughter were invisible. Her familyâs priorities are not represented in the conversation about neurodiversity and itâs more than that, she thinks that we are lacking the language that we need to describe important differences between autistic people. The word âautismâ is being used to mean too many different things.
In this heart-felt episode, Nabeelah told us about the early signs of difference she saw in her daughter and how little support there is available. She looked for early intervention, only to be told by a speech and language therapist that she herself was the early intervention. She sought help in online groups, only to be told she was ableist for wanting to help her daughter stop using nappies. She told us of her daughterâs difficulties - pica, toileting, elopement - and how she doesnât see organisations or researchers prioritising the needs of families like hers. She told us of how difficult it is even to describe her daughterâs challenges, because all of the language has been problematised. She told us of her love for her daughter and how joyful life with her could be.
Nabeelah isnât denying the reality of anyoneâs struggle â but sheâs saying that some people are being missed. There has been a re-centring of the autism discussion, away from the severely disabled, and yet we donât have the words to describe the problem.
This conversation is a valuable insight into the world of the families of severely autistic children, and a wake-up call for anyone who might have assumed that, at this end of the spectrum, needs are being met and families supported.
Hereâs a link to the study Nabeelah mentions which looked at the underrepresentation of those with intellectual disabilities in autism research.
For a discussion of PACT and other similar early intervention approaches briefly touched upon in the episode, start here.For information about the Cambridge Attention, Learning and Memory centre click here.
Our episode with Amy Lutz, mentioned in this interview - parent of a severely autistic adult child and disability historian.
And finally, here is a link to some research on developing the consensus definition for profound autism.
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