What are typical gatekeeper statements which make it harder for girls to get a diagnosis?

Increasingly discussion around the incidence of Autistic girls and boys is opening up. It is now thought the number or girls may be not that different to the number of boys. However, girls still face an uphill battle in even getting access to assessment. This is typically because myths around what Autism does and doesn’t ‘look like’ still abound. Research is aiming to identify a female phenotype which, while also potentially problematic, does at least begin to signpost more differences in presentations.

Caveat – we believe the use of gender definitions to define Autistic characteristics is unhelpful and should be avoided. We use the gender distinction here simply to demonstrate the gateway issues typically facing girls, but these are equally present for any Autistic person who does not present as the gender they are outwardly perceived to be.

Unfortunately such information is only slowly trickling down through the various gateways through which women and girls are expected to pass in order to begin the diagnostic process. Think – doctors, educators in particular. These are often the first people we turn to when we begin to suspect there might be something going in the background of the challenges we or our children are experiencing.

Unfortunately, for girls the following statements are all too common:

  • But she has friends
  • She can make eye contact
  • She is imaginative/creative
  • But she’s fine at school
  • She’s just shy

Or the flipside:

  • But she’s not disruptive
  • But she doesn’t like maths
  • She has no special interest in maths or engineering

All very simple statements, but any one of which reveals not only the poor levels of understanding still existing in these gateways, but which instantly provide the user with justification to refuse referral for assessment, and resistance to accommodations in school and workplace settings.

This must change!

So what are our options?

There is no way to sugar coat it – the system is broken in many places, and you will need to approach this differently from the way you would if you had say a toothache and went to the dentist. In this case, one look in your mouth and the dentist will be able to see several things which might be causing the pain, they could immediately offer one or more possible supports, and these will be accessible in a short period of time, albeit with a possible financial cost attached. The same is rarely true for Autism or any other neurodiversity for that matter. On the first, second or even third or fourth occasion you raise the question you will likely need to present evidence, justifications, and demonstrate a level of knowledge which might surprise you and even then you may still continue to hear the phrases above.

Frustrating as it may be to hear, the only answer right now is to educate the gatekeepers yourself.

Understandably this is daunting and might be something you do not feel equipped to do, for a variety of reasons:

  • You don’t feel you have the knowledge beyond your own experiences – you can describe your challenges or those of the child you are advocating for, but you don’t know how these fit into the diagnostic criteria
  • You don’t know the language the gatekeeper needs to hear to trigger recognition – for example you know your child can’t tolerate the sound of a hand-dryer, but you might not know the trigger phrase ‘Auditory sensory sensitivity’
  • You don’t understand the system you are trying to convince – you don’t know the processes, checkpoints, and key influencers
  • You are overloaded already, and this feels like an extra drain you cannot face – you are already ‘fighting’ daily overload, either your own or that of the child you are advocating for, this likely feels like a ‘fight’ you don’t know how to approach or have the energy for
  • Etc.

And when we are asking for help, as we would if we visited the dentist with toothache, we just don’t understand why the onus is on us to provide evidence, justify ourselves and still face doubt and mistrust.

So where to start?

  • Make a list of the person’s core strengths and challenges. Include both – Autism is always both and explaining this gives you the opportunity to demonstrate the positive experiences and skills you or your child have. All too often gatekeepers can appear to be focused on the challenges and demands which might arise – so help them see the benefits too
  • Make a prioritised list of ‘anticipatory accommodations’. This is a formally term relating to accommodations which could be made right now, prior to diagnosis. Ideally, these should be linked directly to the challenges you or your child are experiencing right now, and which are affecting your/their ability to access education or work. This could prove to be a rather long list, so starting with one or two things which could have the greatest impact is best
  • Engage with support groups who might have experience of the local education system/teams or workplace and who might be able to offer targeted support and ideas. There are lots of us out there now who have been through this process and who are more than willing to help you get through these barriers more easily

Ask for help, local networks will know what you are going through and can often put you in touch with people who have already ‘been there, done that’.