Actually Aspling’s Diagnosis Reflection

I’ve been thinking about my diagnosis a lot recently, with all the work I’m doing for university and my blog it’s allowed me to really take a step back and reflect on everything. Please note that everything written in this post is based off my own personal experiences of going through the diagnosis process.

I spent so much of my teen thinking I was weird, knowing I was different but couldn’t understand why, that was until I was diagnosed at age 25. This is considered a late diagnosis, but honestly, I expected it; and for a few reasons.

1. I’m a woman – early research into Autism was carried out with predominantly male samples, this is where idea that only males were Autistic came from. So the idea of women being Autistic seemed alien for a long time. Research has since shown how women and AFAB individuals manifest traits differently (although anyone can present with any traits regardless of gender), for example, how we appear ‘more social’ and use more compensatory strategies (see point 5). So, because we present differently often we are misdiagnosed or remain undiagnosed completely.

2. Diagnostic assessments are biased – many of the diagnostic tools are out of date, often for children and are based on a stereotype. Many of the adult measures which exist are still unsuitable as they focus on the traditional outdated viewpoint. These measures are not empirically sensitive, they don’t allow for the individual and cultural differences. There are a few newer screening measures which are aimed at women and girls, however these still remain somewhat restricted.

3. My age – people question whether you need a diagnosis when you are older, will it make a difference. Everyone is all for early intervention (myself included), seeing the importance of child diagnosis, but when it comes to adults were often left out.

4. My education – during the time I was at university, I was somewhat educated; but of course to some people that means you can’t possibly be Autistic. You’re deemed ‘high functioning’ or ‘too intelligent’ and not worthy of support (by the way functioning labels suck!). I’ve been told so many times that I’m ‘cognitively able’, or people look at me and assume that I don’t need support.

5. Camouflaging – this is linked in with all the previous points. The fact that I appeared ‘normal’ or ‘less Autistic’. I spent most of my life masking, changing my behaviour to fit in with those around me, mimicking social cues and the actions of others. Because I can change myself to fit in to society’s box. The truth is it’s exhausting, to hide your mannerisms, to suppress the stims, to bottle up all the emotion. This is one reason why so many people are misdiagnosed or missed completely.

All these things affected getting a diagnosis, and affect so many others. As adults were constantly turned away, told it’s just anxiety and left without the support we need. It is also important to recognise my privilege, in that I was able get a diagnosis, because for many it’s not even an option, it’s not accessible. This needs to change.

4 thoughts on “Actually Aspling’s Diagnosis Reflection”

  1. Thank you, my daughter is 23 and waiting for an assessment, (three and a half years now on the NHS) but your story is so similar to hers. Your blogs are very helpful.

  2. I’m not actually in favor of early intervention. For autistic children, “early intervention” is often more harmful than beneficial, and growing up misunderstood and untreated is probably better than having early intensive ABA. If there was actually good information about what would actually help autistic children grow up happier and more functional, I’d be in support of that. But for many kids, an early diagnosis makes their lives worse, not better.

  3. I definitely agree, we do need information and resources which actually ensure the happiness of the child, rather than harmful forceful therapies which are damaging both short term and long term. Thank you for your comment.

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