Since I was diagnosed with Autism Spectrum Disorder, or more specifically Asperger’s, I have had to attend meetings with different caseworkers, psychiatrists, therapists, doctors, people from the unemployment office, people from different unions and such. In general, there’s been a lot of the same kind of meetings, but with different people, because god forbid any of those people could actually communicate with each other.
Now, some of these places I always go alone now, because it works best for me, but there are places and meetings that are different. Sometimes I think it is pretty essential for people like me, like us perhaps, to take someone with us. I almost don’t care who you choose to bring as long as you bring someone.
I am not saying this because we can’t do these things alone, but because it is easier for others if we don’t go alone – and in the end, that makes it easier for us too.
Not only that, but I have discovered a rather discouraging trend while going to all these meetings over the last few years – namely that we are simply treated better, with more respect and kindness, if we are not in those meetings alone.
I’ve had someone with me and deeply regretted it afterwards, just as I have gone to meeting alone and regretted it afterwards as well. That’s why I am sure that it is also very much a matter of who you yourself is as a person and who is going to sit by your side, just like the specific kind of meeting is also an important factor in determining whether or not to bring someone.
But first, let’s look at the reasons to bring someone with you to your meeting and then discuss in what situations it might be really helpful.
Bring someone to explain Autism Spectrum Disorder
The most common thing when I go to meetings, and therefore also the most important reason to bring someone, is that most people just don’t know what ASD or Asperger’s is. A lot of people have heard about it and sure, they might even have read a bit or watched a few videos about it, but they really have no idea how it affects us in our daily lives. The most annoying thing is that often they refuse to acknowledge that they don’t know something, so it is necessary to sneakily explain in some roundabout way what ASD is. Sometimes, I’ve spent entire meetings trying to explain simple things and for some reason, my explanation just doesn’t get through.
I suddenly discovered, however, that if I bring someone else and they say pretty much exactly what I’ve been saying the entire time, the others in the meeting seem to understand. Maybe it really is that those of us with ASD speak a different language from neurotypicals and having an interpreter just speeds things up.
It’s not just that, though. There’s more to it. If I am in a meeting about finding employment, I need to talk about how I get a job, I don’t want to sit there and explain or defend myself all the time. I don’t want to be both the person that needs their help AND the person that has to teach them to give me that help. It puts a lot of unnecessary stress and pressure on me and I am already stressed and pressured just being there.
It feels a bit to me like people think I exaggerate when I talk about the challenges, I face every day, even though I always try to be as objective as I possibly can. When someone else talk explains my challenges, it feels like the challenges are taken more seriously. I think perhaps neurotypicals tend to be guided a lot more by their emotions and therefore they might assume I am doing the same thing; that I too am being overly emotional about a situation.
Bring someone to fight for you
Going to meetings with caseworkers and other people who are supposed to help you isn’t supposed to feel like a battle – they are there to help you, not fight you – but often I feel like it is a battle. A battle to be understood so that we can get the help and support we need to survive in society.
Sometimes it can be a challenge to always continue to fight the same battles over and over again, so bringing someone to take your side, fight your battles with you or even for you, can help get you through tough conversations. It has helped me many times.
Especially when someone, perhaps a caseworker, is trying to make me do something I really can’t do, or have a really hard time doing, having someone there by my side helps a lot. I have a tendency to say yes to more than I can actually handle because I have grown up with this feeling that I am the one who is wrong and thus should be as accommodating to others as possible.
Saying no can be difficult when people put a lot of pressure on me, and honestly some caseworkers can really make us feel like we are the worst people in the universe, and in those cases having someone say no for me is such a relief. Of course, it’s important to have some guidelines for the conversation planned out before you go in there with someone else by your side. I have tried quite a few times when the person I brought with me had their own set of ideas as to what was best for me and I didn’t appreciate that at all.
Remember, you are the one who knows yourself the best and you need to set your own boundaries. If you feel like you don’t know yourself very much, which I actually do, then it is time to start figuring out who you are.
Bring someone to make everyone behave more professionally
Last but not least, in my experience most neurotypicals tend to behave more professional and be more polite when someone else is in the room. It might seem like a silly reason to you but hear me out. This does in no way mean that I think all caseworkers are ignorant and rude – far from it.
If you are on the Autism spectrum like me, then you know that others can be rude, condescending, disrespectful and ignorant when they talk to us. They can treat us like we aren’t humans like them, but some lower form of existence.
Now, don’t be angry or hurt by them, because it’s not only their fault. Yes, they have a responsibility to learn about what Autism is if they are supposed to be the ones who help us, and I do believe that many people make an effort to do so. The problem is that even if neurotypicals know something in their head, they react emotionally before anything else. Therefore, they may talk down to us, not because they think less of us, but because their brain is not as quick to connect what they have learned about ASD to the person sitting in front of them. If I say something, they feel sound ridiculous, they will react emotionally first and then maybe later realise that it wasn’t because I was stupid, but because I have ASD.
Of course, I have also met people who are simply not nice people, but they tend to treat everyone bad – not just those of us who are on the spectrum.
Now, I don’t know exactly how it works, but when I bring someone else to a meeting it’s like the meeting becomes less informal and therefore the participants all act more politely and like the instant emotional response of the neurotypicals in the room as to go through an extra filter.
I want to make it clear that in this case you are not bringing someone to make others less rude for your own sake, you are bringing someone to raise the level of professionalism in the room for everyone’s sake. The productivity and progress made when I bring someone to a meeting with me is simply of a different quality.
Now, these reasons are mainly my top three reasons to bring someone. It can go really wrong when you bring someone too, but only if you and the person going in aren’t clear on what you either want or need to have happen during the meeting. So, my advice when bringing someone? Easy. Talk everything through before and after the meeting.
It is very important to plan out what you need to gain from your meeting, but it is just as important to evaluate how the meeting went. Did you get what you wanted? If not, why not? Did you get hurt because of something someone said or did? Was that hurt addressed properly or does it need to be addressed to improve the relationship between you and your caseworker? Was there something you didn’t understand? Was there something they didn’t understand? What should you and the one you are bringing with you do differently next time? Ask all those questions and more. You don’t want any misunderstandings to happen between you and the one you brought with you during a meeting, because that can derail the whole thing and make it a lot more stressful.
I recommend bringing the same person if you can, because if someone follows you to many meetings, they will be intimately familiar with you and your situation. As I said, neurotypicals are far more emotional than we are and that can be a strength as well – as long as they are on our side, right?
Sure, it takes a lot of work to get through these meetings in the best possible way. But think of it this way. A lot of work now may literally remove years of misunderstandings and lost battles in the future.
Why? Because being on the spectrum means that right now, and in the foreseeable future, most people won’t understand us. The world, society as we know it, was built for neurotypicals and those of us who are different need to work hard to find our place to feel safe and home.
We need support, yes, but once we get it a lot of us are truly capable of living happy and satisfying lives.
What is a bit of hard work compared to that?