Autism Interview #195: Kate Blackham on Late Diagnosis and Advocacy

Kate Blackham is an astrophysics editor, tutor, mother, and blogger. During the COVID-19 pandemic, she took a teacher training course where she realized she had ‘high levels of autistic traits’ and is now awaiting a formal diagnosis. This week Kate shared her experience pursuing an autism diagnosis, advocacy, and autism acceptance.

What made you pursue an autism diagnosis?

I’ve always known something was “wrong” with me, but have gone through life being told I’m fine, I’m normal, but I do need to try harder to not be so insensitive to others, weird, etc. I’ve struggled with my mental health my whole adult life. First it was just recurrent depression, but in my twenties I developed anxiety as well and now have panic disorder. For some reason I’ve always struggled to get a doctor to take my mental health problems seriously. I wasn’t prescribed antidepressants until 20 years after my first suicide attempt. When I discovered that I actually have high levels of autism traits, it was a light-bulb moment for me and explained all my difficulties. It’s been really distressing to know that something isn’t quite right, but to feel silenced – as if I’m going through my entire life in one of those nightmares where I’m screaming but no one can hear me. I want a diagnosis for the confirmation that I’m not “mad” basically or perhaps, by this point, why I’m now mad.

What is it like to wait for an official diagnosis?

Frustrating mostly. I guess I’m also afraid that this is all in my head. I think a lot of that comes from societal expectations that autism didn’t exist, or that autistic girls/women don’t exist. And having just been told to get on with it and learn to be an adult already. It gets better though, the more I learn, and of course I’ve been researching autism voraciously now, the more I am convinced that I am autistic and the doubts get rarer with more time in between.

You’ve mentioned that corporal punishment and bullying in schools shaped your eye contact development, but your daughter didn’t have to endure that. You wrote in a blog post that although she hasn’t learned to make eye contact, “At least she is listening to you. Whereas I can only pretend to listen to you.” Have you felt any more comfortable unmaking since learning about your diagnosis?

Gosh yes. When I was a child, I used to talk “at” people. But learned that that kind of non-reciprocal behaviour is not acceptable, especially among girls. I’ve basically given up trying to hide the real me now and will happily tell everyone and anyone that I’m being assessed for autism – which isn’t many people as the only places I go outside the house are church, the library and the Brownie Guide pack I help to run. I still do a lot more eye contact than I want to and come home from church shattered every Sunday (I go to an extremely social church) but the ones that know have all been lovely about it and no one has tried to pray the autism away, which is a massive relief.

In what ways (other than not forcing eye contact) is society more accepting of your teenage daughter than you (when you were her age)?

My daughter’s school has been really helpful and supportive. My daughter referred herself to the school counsellor at the suggestion of some of her friends. It was her that picked up that my daughter has severe anxiety – my daughter hides most of the worst of it from me. The school have put in place accommodations for her forthcoming GCSE exams. She’s going to take them in a small room with just a few other students rather than in the main sports hall with 180 other students. The school has issued her with an anxiety card – basically she is allowed to walk out of any class at any time and go straight to student support, she just has to show the teacher the card. She rarely uses it, but I think knowing that it is acceptable to leave when she feels overwhelmed is hugely reassuring. When I was younger, there was none of this. In the 1980s and 1990s you were just expected to “pull yourself together.”

What work still needs to be done to improve acceptance for you/your daughter in the community where you live?

Well I live in a small rural community, so I already know pretty much everyone I interact or meet with so, I don’t really feel unaccepted personally. That said, it’s a small community and people talk. I have friends in the village who I’m sure are similarly on the spectrum. They’re fairly reclusive and can act a little unusual in public. I don’t know the full story, but one of them accidentally frightened a teenage girl, and she posted about it in the village facebook page – she thought he was following her, but it sounds like he was just walking home and talking loudly. It started a bit of a witch-hunt for a while, and I was quite worried about the consequences for my friend for a while. So I don’t think my village is there yet at accepting autism when strangers are displaying traits obviously.

In what ways have you had to self advocate in the workplace?

I haven’t is the short answer. Looking back I had enormous problems coping with my job in my twenties working in an huge open-plan office. I was notorious for having “meltdowns” in the workplace – I think in many other companies I would have been disciplined for my behaviour, but I was working as a technical editor of computer programming manuals, and I was far from the only undiagnosed autistic on the payroll. After that I’ve always worked from home. As a freelance book editor, I’m free to choose my own hours. I also only work part-time as an associate lecturer and my institution (the Open University) is entirely distance learning at the undergraduate level, so remote working at times of my choosing are the norm. I’ve basically set my life up to work around my limitations. I’m very blessed.

In what ways have you had to advocate with your daughter in the school setting?

I’m amazed by how well-organised my daughter’s school is in this regard. They basically put all the provisions in for her themselves. The minute the school counsellor informed them she had severe anxiety, they kicked it all off themselves. Currently, I just keep them in the loop regarding how the assessment process is going. I think I’m more worried for the future. It will only be two years before she goes to university and I understand that students have to do a lot of self-advocating as legally they’re adults. That’s not something that is a strength for many autistic students, my daughter included. I just hope and pray that universities have become as proactive as schools seem to have become.  

What are some important things you are doing as a parent to help your Autistic daughter develop confidence and independence?

She has a really supportive group of friends at school, many of whom seem to be neurodivergent themselves. She tells me they’re the weirdos who annoy the popular kids, but they really look out for each other. We encourage her to spend as much time with these peers and living where we do there is a lot of driving her to places to be with them (she won’t be able to drive for another year, when she turns 17). She also goes to a Ranger Guides group every week. Despite being only a small group of about 12 young women, my daughter is good friends with three other girls within the group who are autistic/neurodivergent. I’m really glad that she has two strong communities around her with peers that accept her as she is. That’s all you can really ask for.

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