Q & A with Mel Spencer OAM

This month, we caught up with Mel Spencer OAM, CEO of Different Journeys and speaker at our AUStism event in Melbourne earlier this year. We discussed her experience of being both autistic and ADHD and her advice for other neurodivergent people when it comes to celebrating your strengths and advocating for your needs.

Thank you so much for joining us, Mel! For people who might not be familiar with you, can you explain how you discovered that you were autistic and then that you were ADHD as well?

So, my children all received a diagnosis of autism, and their psychologist, who I'd been going backwards and forwards with for years said, ‘You do know that it's you that's autistic?’ And I went, ‘Oh my God!’ And so, you know, we chatted about it and then I went away, and I went, ‘Oh my God, I'm so autistic!’ My children think I'm more autistic than them because they've had more therapy than me.

And then it wasn't until, two years ago I discovered I was ADHD. I had to send the psychologist all of my primary school reports, which I still had, and that was like ‘tick, tick, tick!’ And that was more life changing for me than the actual autism diagnosis.

Why would you say that was more life changing?

Maybe because so many things then suddenly made sense. I spent such a long time in my life beating myself up for not being good enough, not recognising it was actually the ADHD, you know? Like the cutlery drawer - I cannot put that in order, and people will come to my house, and they'll redo the cutlery draw!

I used to make myself feel really bad, thinking ‘How come I can’t do it?’ It's actually the ADHD - I'm unable to finish that task and move on to the next. I see such a big pattern in my life, and I think mental-health wise that I spent such a long time beating myself up and I didn't need to.

Another example is that, for me, sitting still is really difficult. And everyone at work goes to me, ‘Oh, you have to go on a beach holiday!’ Oh my god, I can’t do that! I’ve now worked with a psychologist who’s said ‘Mel, you’re never going to be able to do that: that’s the ADHD part. What you need to do is find a different interest or thing to do than what you normally do – that’s a holiday.’

We know that neurodivergent people have a lot of strengths that often unfortunately go unnoticed or under-utilised. Do you think that people who are autistic and ADHD have specific strengths, or what are some positive aspects of both autistic and ADHD that are that people might not understand?

Well, getting things done, right? If you need things done, just ask one of us! Creativity, thinking outside the square, and creative ways to do things - I think there's a lot [of strengths].

But I think I’m really mindful about answering this question in the right way, because I hate the phrase, ‘What’s your superpower?’ That idea that because you're autistic or ADHD, you must have a superpower, right? We’ve all got different strengths, and for some people it's extremely talented stuff, but for other people, getting out of bed and functioning is a strength.

I think I'm really mindful about answering a question about strengths because I think that the strengths are unique. I think the strength for me personally is actually not to shy away from [being autistic and ADHD]: I can go, ‘This is who I am,’ and embrace that and get more understanding out there from other people.

What are some challenges that you think people who are autistic and have ADHD might experience that we should keep in mind? How can we best support people when navigating those challenges?

Manage expectations. If I’ve got someone coming to my house, you know, a tradie or someone new, I ask for a photo of them. So, when they come to the door, I know exactly who they are. That increases predictability. Another way to manage expectations is if you're not able to do something, tell the autistic people involved well in advance. Don't just keep pushing [autistic people] off with fake promises.

I recently was at Government House for my OAM Award, and I said, ‘How are you going to make this neurodivergent-friendly?’ And they were really great and set aside a room for my children and husband to go into so that they weren't waiting, because they recognised that waiting was actually one of their biggest challenges. And then, they brought them out into a  reserved seating area near a curtain, so that they could go behind it and sit on a couch. Now, that hasn't cost any money, has it? But it’s considerate, and it's given [my family] options to be able to choose how they want to participate in and control the situation.

There might also be different ways that I interact socially. If I'm not looking you in the eye and I'm drawing, for example, I’m probably still listening to you. I think it's acknowledging that different doesn't mean worse, different doesn't mean rude, different just means that these are the things I need to have do in order to be in this moment and present with you.

How can neurotypical people best support people who are autistic and ADHD? What are some things that are both helpful and unhelpful that are good to keep in mind?

One of the most insulting things is the idea that everyone's a little bit autistic. I know it's them trying to connect, but it's insulting to actually live in a world that is autistic or ADHD and having other people tell you those things. They're trying to connect with you, but it becomes insulting to dismisses those autistic traits by going, ‘Oh yeah, everyone has those.’ Well, no, they don't. We might all have those, but when it's impacting you to the point that you're not functioning, then that's a problem that needs support.

The other bit I would like to probably say is asking the question: ‘How can you support us?’ Don't make decisions for us. Give us options, or ask us ‘How can I best support you? What do you need?’ Don't belittle me if I ask for something that you think is stupid; find other ways to connect with me. Build up your trust with me and it's amazing what will happen.

Asking someone what they need makes a difference. Sometimes, I might not know what I need either, but maybe you can give me two choices rather than one. So, that way, I’m feeling I have some control over the situation because I’m participating with my choice.

I also see that whenever someone is in meltdown, everyone asks that person what they need, but this doesn’t recognise that that person can’t do anything in that moment, let alone tell you what they need. So, you need to allow them space, and it’s not until later when the situation has deescalated that you can ask those questions. The expectation to fix things right then and there is unrealistic, and in actual fact, sometimes you don’t even know the reason for the meltdown. It might just be a complete moment of sensory overwhelm. Instead, the aim should be to deescalate the situation and calm things down before doing anything, particularly by talking softly rather than yelling.

Do you personally find that stereotypes associated with autism and ADHD prevent people from being as supportive as they can be?

Yes. And I think for me as well, it's the comorbidity of ADHD and mental health and having the three comorbidities that all operate differently. That’s why [having] the right support and someone who can understand and give you permission to be who you want to be, rather than masking all the time, is great. For me, that’s been a really important and life-changing thing.

What would be your advice be to other people who are autistic and ADHD in terms of looking after themselves and being their best advocates?

It’s making sure that they're advocating for what they want and what they need:

Communication styles

Who says everything has to be spoken, right? When we're advocating for ourselves, there's so many different communication styles. We can audio record, we can write, or we can get somebody else to come in and advocate for us. So, I think it's changing the traditional stereotypes of how we advocate to meet our own needs.

If you’re uncomfortable asking questions, for example, or you don’t know how to ask the questions, then get a script, write a script or take someone with you. Often in meetings, particularly with ADHD and autism, my mind’s racing so fast that sometimes I don’t hear what message the other person’s trying to deliver. And so, having someone else in meetings and things like that has been really helpful. That allows me to go to them afterwards and ask, ‘Is this what you heard?’

Consider your environment and how you’re feeling

People definitely expect that we’ll always be ready to sit down and have a conversation, but you might not actually get the best out of that person that way. If we’re having a conversation while walking or moving around, that might be difficult due to the additional sensory input. Having more difficult, important, or serious conversations on the phone in the car, for example, might be less confronting.

I think the other piece of advice is what might work for me one day won't work for me the next. For example, sitting in a café – they always play music, right? I’m sitting there trying to listen to the person I’ve met for coffee, and the music’s going, there’s kitchen noises and there’s all the other voices.It just becomes a vortex in my head, going round and round.

I’ll often ask, ‘Can you please turn the music down?’ and most people say ‘No.’ But when I say, ‘I’m autistic,’ they’ll say ‘Oh okay. We’ll go and turn the music down.’ But I shouldn’t have to justify myself like that.

But some days I can go in and I don’t hear anything. Often, it’s about your anxiety levels, too – that can change things. Being aware of what’s going on for you can help.

Find support in others

The other thing [about self-advocacy] is not to do it alone. Make sure that you're connecting in with a community of like-minded individuals who you can learn from, but who can support you at the same time. Then you’ll feel empowered, because you're able to help somebody else, but you're also feeling empowered because suddenly instead of having no ideas, you've got heaps of ideas about what works for other people.

Know your limits

If you’re having a really intense day and someone has gone, ‘Hey, let’s meet for coffee’, you can suggest going somewhere quiet if that helps you. Or, simply say, ‘I really do want to meet you, but today I’m spent. I have no spoons left.’ If you’re the other person, don’t take that personally, just recognise that the other person is at capacity.

Do what works for you

When everyone talks about how to take care of yourself, they mention the standard things like quality sleep and having a rest, which are often simple for neurotypical people to achieve. I find all of these things really challenging, because they’re things as an ADHD person that don’t often work for me.

Instead, find somewhere or something that meets your needs and embrace it. For example, rather than saying ‘I’ll go and sit and have a cup of tea to relax,’ recognise that doesn’t work because sitting still is hard. Think instead: ‘What is it that I can do?’

Don’t think you have to do what everyone else is doing – if something works for you, then keep doing it, despite what everybody else tells you. That to me is looking after yourself.

Just embrace it!

I think the other part is embrace it. We are here, we are not going away, one day we're going to take over the world! And so, embrace it, don’t be ashamed and talk about it, right? Because the more people understand us, the more they can support us.

Imagine what life will be like if, you know, we were accepted, valued, and honoured as a contributing member of society? The statistics would be looking different, now, wouldn’t they?

Visit the Different Journeys website to learn more about Mel Spencer OAM and her work.