What Makes a Diagnosis Valid?

If an employee informed you that they had been diagnosed with cancer or a heart condition, what would be your first response? If a parent informed a school teacher that their child had asthma or a nut allergy, what questions might be asked of them? Would it be, ‘Who said you need heart surgery?’ or ‘Did you see an allergy specialist on the NHS or through private healthcare?’. It’s not likely, is it? The truth is that the answer to either of these questions doesn’t determine whether or not the individual in question actually has a nut allergy or needs medical treatment. If a medical condition has been diagnosed by a suitable medical professional, we wouldn’t think to challenge it.

So why doesn’t the same rule apply when we’re talking about ADHD or autism?

Last week, I read documentation produced by schools and workplaces for three separate clients that specifically referred to assessments or diagnoses of autism as ‘private’ or ‘paid for by parents’. The documents all shared the same nuance - that somehow, when an autism assessment is carried out by a professional who is paid directly by the individual, it’s acceptable to question the validity of the diagnosis. One case was an adult who had been refused access to assessment on the NHS because they couldn’t produce a school report from more than 20 years ago to demonstrate they had difficulties as a child. Another case was a four year old whose parents had saved every penny they could for over ten months to pay for an assessment, after being stuck on a waiting list for two years with no support for their child who was not speaking and could not yet use the toilet. These individuals, who had already been let down so badly, were now being judged for doing everything they could to access the support they needed and should have been receiving anyway.

So, what should we be looking for when we read a professional report? Who paid for it? How much they paid for it? Or how about how long someone waited, desperate for help, until they could be seen? What do any of these factors have to do with whether or not someone meets the diagnostic criteria for a condition?

Here’s what I look for when I’m considering a professional report:

• What’s the job title of the person carrying out the assessment? Do they have the qualifications required for the job? What specialist training have they received to carry out this particular type of assessment?

• Which regulatory body supervises their work? Are they a member of an appropriate professional organisation?

• What multidisciplinary team are they part of? Which other professionals were consulted with as part of the assessment process?

• Which assessment or diagnostic tools have been used? Are the full results of the assessment shared in the report outlining the specific areas of need for the individual?

• What details are given about the individual? Is it clear from the report that the professional has taken the time to gather relevant background information and that they have a thorough understanding of the individual’s presentation and symptoms?

It’s possible, as it is in any field, to find a practitioner who works outside the ethical boundaries for their profession. But this isn’t the norm. It’s also possible for professionals to make mistakes, to give an incorrect diagnosis and to get things wrong. But to make an assumption about the validity of a diagnosis based simply on who’s paying the bill is wrong in itself. To judge an adult who’s trying to improve their own quality of life or a parent who’s seeking help for their child, because they did not feel they could wait years for support, is wrong too.

Make a critical judgement about a report if you need to but make sure your judgement is fair. And remember, ‘assessed on the NHS’ is not on the list of diagnostic criteria for autism.