Dear Uta Frith: Please Don’t Undo 20 Years of Progress

Mosaic of different people’s faces showing people of different races in a group.

I am not as old as Uta Frith.  I am not a researcher.  But I have been learning about autism since I met my first autistic pupils in 2003.  I’d already been teaching since 1991, and these two boys were the first diagnosed autistic that I had in my early years class.  One of them went on the next year to a special school and spoke his first words at the age of 27.  The other had 1:1 support through mainstream school and completed some GSCE’s.  But even then, I could see that each autistic person was different.

I went to work at an autism specialist school and did my post graduate autism training. I learned about the ‘triad of impairments’ and about Asperger’s Syndrome.  Both were ‘autism’, and in those days, it was still mostly boys.  In my school there were about 92 children.  Most of them were non or minimally verbal.  One or two could talk fluently about their favourite interests.  Only 8 were girls, and they were mainly non-verbal communicators.  We were early adopters of the sensory integration approaches, and I learned to listen to the sensory as well as non-verbal communication of my students.

I learned about the changes to the DSM-V in 2013.  I learned that autism and ADHD could now be diagnosed in the same person.   I was pleased to see the inclusion of sensory needs as part of the identification of autism.

I hated the extreme male-brain theory of SBC.  I thought about it.  I watched my students.  It didn’t make sense.

In 2014 I set up my own outreach service to schools.  There were a growing number of children in mainstream schools whose teachers needed to understand them.  I responded and listened to those children too.

And then emerged the awareness that girls had been missed.  The voices of autistic women being diagnosed after their children and the growing influence of the internet, opened a brave new world to us all.  I was very excited and threw myself to reading all the accounts and the research.  How wonderful it was to be there, in schools, helping them identify those girls who had been missed and supporting their journey through missed diagnosis and misdiagnosis.  The mental health issues started to emerge and the trauma of being ignored for so long.  And I rejoiced at the books and the websites and the research showing us how autistic people were being identified and understood better.  Understanding masking has helped so many autistic girls and boys.  Many schools wanted training, many more children were being helped and supported.

I learned about respectful language, ‘autistic’ and not ‘disorder’, and the emergence of the term ‘neurodivergence’.  I am still learning, still listening and still advocating for those young people I meet.

I knew we still had a long way to go.  The same happened with ADHD.  We are still a good few years behind our push to include everyone who has ADHD… and the missed girls who mask.  And as we journey on, we are realising how much the neurodivergences, well, diverge.  Multiple diagnoses of autism, ADHD, dyslexia etc are taking us on a new part of the journey.   It’s not making more work for schools.  It’s challenging the system to become a different system.  One where all children can learn and thrive in their preferred way of learning.

For all these years I’ve been listening, watching and learning.  I’ve learned that there are autistic people in my family and supported their journey too.  I’ve written books with the voices of autistic young people taking equal place alongside the researchers.  And now one of those early researchers is denying their diagnoses.  Uta Frith has given interviews saying autism is too widely applied.  She has come against those who can speak or articulate well and even taken a pot at our national treasure, Chris Packham.   The National Press playing a dangerous game and giving her airtime.

I have been learning about autism for over 20 years, and I will never stop learning.   I know the lives of autistic people are not easy, and the world is not a kind place for them.  Education is especially torturous.   I have spent 13 years supporting autistic and ADHD young people in education.  Despite amazing teachers and schools, the system is tough and unyielding.   I know because I see it every day.

That’s why I have to say please, please do NOT believe the lies being told by someone who does not seem up-to-date or relevant anymore.   Saying autism is not what it is 20 years ago is like saying the internet isn’t what it was 20 years ago.  I have been listening, reading and learning.  Researchers have been researching.  New understanding has moved us on.  Please Uta, do not destroy the progress we have made.  Young people’s lives can be destroyed by your words and the media storm it has created.  Too many adults have already lived with judgement and stigma that is now turning into self- acceptance.  And so many who really need help are waiting still.  The suicide and mental health numbers for autistic people are already too high.  We cannot go backwards.