Magda Regula is a blogger living in the U.K. and originally from Poland. She was diagnosed with autism at the age of 38 and has been advocating for teaching communication methods that were especially helpful for her since she has become aware of her autistic identity. She writes about her experiences on her website Autistic and Me. This week she discussed her path to a diagnosis and open-ended communication methods that she hopes are taught more widely among therapists/educators.
What made you interested in pursuing a diagnosis as an adult?
I realised I am autistic after my current partner, whom I met online, admitted he’s awaiting an Asperger’s syndrome diagnosis. I was obviously aware of what Asperger’s is and thought my previous partner had it, but at the time, I thought Asperger’s in females was very rare. So when I found the first article stating that females present differently, I thought, “this is it.” Initially I didn’t want diagnosis, thinking, I lived till 37 not knowing and I coped, so I should be ok. But shortly after that, I started having serious problems with a colleague, and because autistic people are much more likely to be bullied, I thought getting a diagnosis will be a solution. Obviously that wasn’t the case, and this is only an example of the naive social understanding that autistics often display.
When/how did you connect with your speech therapist?
The speech therapist was one of two ladies who diagnosed me. I must say initially I was slightly disappointed that she was ‘only’ a speech and language therapist and not a psychologist, but the diagnostic process went really smoothly, and she seemed to know what she was doing. After the diagnosis, we were in touch via email for a bit while she was preparing my employment support plan. That’s when I realised that she speaks to me in a different way than other people, and it really works. Autistic people may be very reluctant to receive help, even if we need it, and I remember how she went about writing that support plan. She stated in her email something that went like this: ‘As I already said, I will now be preparing your employment support plan, and in order to do that, I need to know what problems you’re having at work.’ I then pictured her sitting in front of a form that she has to fill in, and I immediately felt like I needed to help her do her job. So she twisted the situation from her helping me into me helping her, and it made it so much easier to open up.
I also noticed she used what I started calling ‘sentences with a void’ instead of questions. It took me ages to actually work out how to use them myself, and I’m still not sure I’m doing it correctly every time. The other technique is offering open-ended options within a ‘Problem, Option 1, Option 2’ formula to give a choice to an autistic person. So for example (me to my partner): ‘I wonder if we will be able to live together. I know we’re both autistics so we need our own space a lot, but being able to spend time together without the need to arrange it would also be nice.’ This can also be used to talk about more trivial problems like what to cook for dinner.
The communication methods your ST used–were they part of a prescribed strategy or plan? What were your sessions like and what did you like about them?
I only met Oriana twice in person, but we exchanged quite a few emails. I don’t think her communication methods were part of a prescribed plan. I’ve actually spent a few months lately trying to find out more about those methods, and no one knows anything–I even asked some university professors. What I liked most about those methods is that they made me feel like an absolutely brilliant communicator, not only because I knew straight away what was expected of me, but I was also willing to do what was expected of me. I also have some indication that that lady might have been involved in helping others communicate with me after I was discharged. It’s hard to say 100 percent whether that is true, and I never asked, but I’m good with spotting patterns in communication (‘that’s not how people normally talk’), and if a certain statement made me want to behave in a certain way, I immediately had this strange feeling ‘that’s how Oriana used to speak’. There’s something taboo about communication, wouldn’t you agree? It never gets openly discussed how we use language to influence others, and I guess that’s one reason why I never asked if she was involved. Plus, in some situations, asking about her would invalidate my actions.
One example here would be when I had my claim against Home Group in employment tribunal and they claimed that my autism diagnosis was private and they paid for it while it was on NHS. I got really upset and sent an angry email to the tribunal. Obviously the tribunal clerk was not responsible for what Home Group did, so my behaviour was not appropriate. In response, I got an email that started with ‘Thank you for your recent correspondence that we put into our file.’ Everyone would probably agree that emails don’t get put into files, and it didn’t even state what file it was. So it was an unusual statement. And yet it was there. So I started to think what kind of correspondence it was to work out what file it would go to. The email was very general and obviously there’s no such thing as a ‘general file’ as no one would be able to find anything in it. So I started thinking about what other features my email had, and I had to admit it was rather rude. I then pictured my email being put into ‘naughty claimants’ file and I realised I don’t want to be in there! So I apologised.
Are you still with me? It was a hint that I need to apologise, but to create that hint someone needed to know very well how I understand communication and how I classify things. I remember Oriana said she was doing some research on females’ problems with employment, so it wasn’t impossible for her to be in touch with employment tribunal staff. However, I never asked about her because it would be like saying ‘I’m only apologising because you made me to’.
Do you think some people benefit from clearly defined/limited choices or is this a misconception about autism/general parenting that in your opinion isn’t helpful?
In some limited number of circumstances, closed questions can be preferred. For example, if my partner buys two yogurts and asks ‘Which one do you prefer, strawberry or vanilla one?’ it makes sense because there’s no other option (so the question reflects the situation we’re in), and at least he let me chose first, which is nice. But if I was asked the same question in the supermarket where there’s loads of choices, I could get rather annoyed because it would feel like I’m not allowed anything else.
So for me the technique ‘Problem, Option 1, Option 2’ (‘I’m wondering which yogurt to buy, I know we all like strawberry ones, but vanilla would also be nice’) would be much better as it gently suggests what to focus on, but at the same time it sounds like a chat, so that suggests a different choice is also possible. Plus it puts us in a situation where we’re forced to extract information from a chat, which is good training. I also remember that my previous partner, who was probably autistic, used to get irritated when I asked him questions, so this area possibly needs further research. I was actually trying to find out if the current advice on communication with autistics is based on research, and didn’t really find much.
Can you give examples of how this communication method might have helped you as a child or teenager or adult had your parents, teachers, coworkers, employers, friends, etc. understood and embraced it?
That’s a difficult question! Well, I guess if people know more about those communication methods, my life would be easier, but then we can’t expect everyone to be able to know all of it, especially creating hints for autistics. I guess it must be difficult, and the funny thing is, I don’t even know myself how to create hints that I can understand!
However, I have the example of how my mum made me realise that I need to fold my blankets when I’m not using them. I like having a nap under a blanket, but when I’m not using it, I used to just leave it on the edge of the sofa which she found annoying. But when she was asking me to fold it, I’d get annoyed! One day, I remember, I was staying with my partners after my first psychotic episode, and my mum folded the blanket without saying anything and then she smoothed it out really properly, and I found it quite unusual. She did the same thing the next day, so I asked her what she was doing, and she said ‘Blanket needs to be folded,’ and guess what, it immediately made sense to me! To this day, I fold my blankets when I’m not using them.
Obviously I’m not suggesting here my mum was in touch with Oriana–that would be a bit too complicated, but that was the same type of communication, one that worked for me, that my mum somehow managed, and I guess it will be worth finding out what my diagnostician has to say about it. I believe Oriana just worked out how autistics are really thinking, and she created a communication method based on that.
The other thing my mum did around the same time was she hid my jacket in the wardrobe when I wasn’t looking (I used to drop it all over the house), and when I asked her where it was, she said, ‘It’s in the wardrobe. Clothes are in the wardrobe’ and again, it made total sense to me, so I started hanging it in the wardrobe.
Mind you, if she has said ‘I hung it in the wardrobe. Clothes are in the wardrobe.’ it would totally ruin it.
I now call it ‘communication from the system perspective;’ house is a system where every item has its place, and it has to sound like the communication comes from the system perspective to work. Still, I am not entirely convinced if I would be able to come up with the right thing to say if someone asked me about a specific situation.
So in general I think it would be great if someone used those methods to teach me how to keep things tidy as I tend to find it difficult, and if someone tells me that they find my mess difficult to cope with, it really doesn’t help.
What do you like/appreciate most about having a diagnosis as an adult?
Oh, I really don’t know! Obviously it’s good to know who I am, but apart from that, it kind of doesn’t matter. I am trying to use the above communication methods on my partner and they work very well. I’ve been through some really challenging times during our relationship, that includes 5 months in total in a psychiatric hospital and a suicide attempt. It was a time that could split even the best neurotypical couples, and yet we’re still together. However, I’m not confident with how I communicate with him, and sometimes I notice that I avoid discussing certain issues only because I know it could be done better, but I don’t know how this should look like.
So if I could learn those communication methods, I’d say having a diagnosis was really worth it.
Anything else you want to share about what you do/who you are/what you are passionate about?
I set up my website to raise awareness of those methods, but it’s quite tricky really. I often feel like no one is listening. Even if I explained how effective those communication methods were for me, people just say they don’t know anything about them and never want to find out more. You are the first person who actually wanted to know something more.