Sorry it’s a long one 😬. There has been tons of discussion in the UK about the possible introduction of a separate profound autism diagnosis. At the moment everyone falls under the single umbrella of autism, despite the reality that people’s needs can look hugely different.

If you haven’t already seen it they talk about these criteria to meet a profound autism diagnosis:

  • Are aged eight or over when assessed (when abilities like communication and cognition are thought to be more stable).

*Have little or no functional language (spoken, signed, or via device). 

*Have an intellectual disability — typically defined as having an IQ below around 50. 

*Require constant, 24 hour supervision and support for safety and daily living.

For many families raising children who are severely affected like that ie non speaking, significant learning disabilities, medical needs or requiring 24 hour care this new classification could bring long overdue recognition and access to specialist services. In that sense, it may be incredibly helpful. Too many families have had to fight relentlessly just to get the most basic support. I can vouch for that.

However I can’t help but feel concerned about the wider impact. Many of my friends and acquaintances have children who are autistic that are nothing like Reilly but NEED help in completely different areas.

People who don’t meet the criteria for profound autism may still struggle deeply in education, employment, mental health, daily living and social inclusion.

Lack of properly funded, personalised support is such a massive problem.

What we need is a system that recognises that some autistic people, like Reilly need lifelong intensive care and others could need targeted educational, mental health or workplace support. Those needs may also change over time. Help should be tailored to the individual not restricted by where someone falls on a diagnostic family tree.

If a profound autism diagnosis helps families finally access appropriate services then that’s a positive step. Id happily receive it. But I hope it doesn’t come at the cost of reducing understanding, funding or compassion for others across the autistic spectrum.

Thoughts everyone??