The value of a diagnosis

27th November 2019

Time and time again one of the most common questions parents ask me is ‘Why should I seek an autism diagnosis for my child?’ The concerns parents have are often the more immediate, short term ones; access to an appropriate education, disability benefits to try and support the family where one parent can’t return to work or access to Carer’s Allowance to slightly top up the desperately hard task of main bread winner and main carer.

All are valid reasons to seek an autism diagnosis but my answer when asked this question, particularly to more well-off families who can pay for private tutoring or don’t need to access the benefit system, is much the same.

The diagnosis is not a label, the diagnosis is the first point of safeguarding.

Autism does not end at 18. Autism is a life-long condition that needs to be correctly understood throughout a person’s life.

Looking to the future

Education and caring duties aside, how can your child have access to workplace accommodations without their diagnosis? How can your autistic daughter be understood and correctly cared for in pregnancy and childbirth? How can we safeguard our young adults from abuse in an autistic specific way? And more imperative than ever, how do we gain a fair trial and a meaningful justice system for our autistic child as an adult without a timely diagnosis in childhood?

I have spent almost 12 years advocating for autistic women and girls. The reason being, as an autistic woman and mother of autistic daughters, I felt I only had permission to speak from my own experiences.

One of my national newspaper articles mentions the time I (embarrassingly) asked my thankfully adult daughter if she would like to Netflix and Chill. I had no idea what this slang term meant, I just assumed it meant we would watch Netflix and relax perhaps with some popcorn and wine?

When my daughter managed to stop laughing, she explained this was a slang term used by young adults to hook up and have sex. Awkward. Even more awkward was that I asked her loudly in the middle of a supermarket…

Unfortunately, due to the lack of nationwide safeguarding and sex education that is tweaked for autistic young people, autistic young people may find themselves accused of sexual crimes, and in the most severe cases, given a criminal record. I know that understanding jargon is proving an issue for many autistic teens I see in my work. Slang terms such as Netflix and Chill which may be taken literally and lead to potentially risky situations. An autistic young person may agree to this, assuming it means watching films and relaxing, giving the person who asked the impression they are consenting to sex. Alternatively, an autistic young person may ask this of another, wanting to innocently watch films together, but it is interpreted as inappropriate sexual expression, possibly seen as abuse or a potential criminal offence. In the age of social media and online communication, an autistic young person is wildly vulnerable to being misunderstood and left with a lifelong mark against them.

Would they receive fair treatment, questioning and fair trial without that diagnosis as a child?
How can we protect our children now to ensure that if they face court in any capacity they will be understood? I believe diagnosis is the answer.

Justice system

I have been in court rooms with autistic adults without official diagnosis where this has gone wrong.

Questioning an autistic adult who has no official diagnosis may as well include questions half in English, half in Japanese; we get the logical elements of the question but rarely the contact and hardly even the intention.

One autistic parent I supported in family law was asked ‘So you’ve been on a parenting course? What did you get out of it?’

The parent replied, ‘I met another autistic person, I don’t feel so isolated anymore and we are going to meet up next week.’

The court psychologist then noted ‘parent has no concept of child’s needs above their own.’ Wrong!

They had been asked what THEY got out of it not what THEIR CHILD would gain from it. Had the question been, ‘So you’ve been on a parenting course, what is the best strategy you’ve learned for parenting there?’ the answer would have been very different!

In 2016 I made a short documentary called The right to remain understood. The topic was the experiences of two young people, later diagnosed as autistic, and their experiences in custody. The experience was a real eye opener for me. The survey ‘Autism, Police and Criminal Justice Global experiences’ that went alongside the short documentary also shone a light on just how many autistic people could be in prison after a false confession.

96% of autistic adults and their caregivers asked felt that autistic people were vulnerable to making a false confession – 96%!!!

How many adult autistics without their official diagnosis have been vulnerable to financial abuse via the court system, needing certainty more than the air they breathe and paying out of court settlements even though they were innocent just to stop the awful proceedings?

I shudder to think how many autistic adults without a diagnosis are in the prison system for crimes they didn’t commit or believe they were committing.

The decision not to obtain a formal diagnosis is far-reaching. So, if you or a friend are pondering the value of an autism diagnosis for your autistic child – please think again.



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