Our struggles are real

 

--- Kajsa Igelström ---

One of our questionnaires in early 2017 ("The Strengths and Weaknesses questionnaire") contained this question: 

"What do you wish other people could understand better about you?"

We got comments from 103 autistic people, 15 of whom were male. (If you're a man, please consider signing up for study invitations or following our FB page – we need you too!)

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The participants were all adults recruited mainly in closed Facebook groups. Although their opinions were somewhat diverse, some very common themes emerged:

1. Our struggles are real

Since our participant pool was not intellectually impaired, many were able to hide their difficulties in daily life. This is often especially true for autistic women, who can be good at "camouflaging", i.e. imitating non-autistic behavior despite their very different cognitive style. In fact, intelligence can be a serious barrier in getting support, for both men and women. How can a person who is, say, a parent of two, or employed full-time in a skilled job, have insurmountable challenges with household chores or going to a dinner with friends? Or how can someone who seems completely normal be on disability leave or receive other support measures?

For autistic people without intellectual disabilities, an uneven profile of skills, strengths and weaknesses is reality. Many can cope with challenging situations for a limited period of time without any noticeable problems, only to melt down afterwards or sleep for hours to recover. The harsh side effect of being intelligent and able to camouflage can be a feeling of utter isolation. When difficulties or needs are questioned by non-autistic people, or when there are comments like "we all have these problems" or "get over it", an already challenging life can become unnecessarily difficult. Many expressed that they wished people could understand how exhausting some situations are, and how hard they have to work just to function in everyday situations.
 

2. We're different, not worse

Bridging the gap between the cognitive styles of autistic and non-autistic people is a two-way mission. It's often discussed how autistic people could get trained to function in a more neurotypical way, but when it comes to non-autistic people's attitudes towards autistic people, few would talk about teaching neurotypicals to think more like autistic people.

But isn't that an interesting thought? That, in a way, you could say that a non-autistic person lacks the theory-of-mind function necessary to empathize with autistic people?

I phrased that in my own way, but many of our participants expressed that they wished to be seen as different, not deficient. Many autistic individuals without intellectual impairments – and an increasing proportion of non-autistic people – have started to think of the "autistic brain" as a natural variation that simply represents diversity. Opinions differ, but a large proportion of our participants expressed that they wanted to be seen as different – not worse.

This theme could be seen in a few different contexts within the responses. Some participants who preferred not to socialize much wished that others would understand that this doesn't indicate that they are selfish or mean human-beings. Some mentioned that they wished that their inability to do certain things would be more okay with others – that the limitations could be accepted as a difference rather than a bad thing.
 

3. We're much smarter than you might think

It's easy to underestimate someone who isn't super-expressive when it comes to body language or articulating emotions. Similarly, those who struggle to process certain kinds of information, like verbal instructions, might be seen as slow or inattentive. It's common for autistic people to have some of these challenges while simultaneously being extremely skilled at processing information in other ways. Many of our participants expressed the wish that others could see and understand their intelligence and other positive qualities. Many felt that neurotypicals often didn't make an effort to really get to know them beyond the first impression.
 

4. Our social discomfort is not personal

There are many things that can stress an autistic person out while being around a non-autistic person. It might be a noisy environment that's exhausting due to sensory sensitivities. Perhaps it is distressing to have a conversation. Perhaps the energy reservoir is empty because of an earlier trip to the grocery store.

A non-autistic person would generally interpret palpable distress, the lack of a smile or a less-than-fluent conversation as a sign of dislike or inter-personal issues. Similarly, if an autistic person pulls out of a social event in the last minute, or says no to an invitation, it is very easy to take it personally.

These examples were common in the responses, and participants expressed that they wished that others could understand that their social awkwardness or avoidance often had absolutely nothing to do with the person they interacted with. Autistic people can get awfully misunderstood when they seem dismissive, discouraging or even angry, when they really are just low on energy or unable to produce the physical social cues that the non-autistic person needs.

This requires neurotypical people to use some kind of cognitive work-around. They need to put aside their intuitive mind reading skills and consider possible alternatives. And every autistic person is different, so – again – getting to know them properly is probably the key to learning to communicate effectively.
 

5. We're not robots

Autism is associated with a lack of empathy. But both male and female participants with clinical autism diagnoses articulated very strongly that they wished that others could understand that they are kind, honest and do care for other people. Autistic people described a huge disconnect between the way they felt inside and what they were able to express and communicate.

One woman said her facial muscles just didn't behave like others': "the way they make my face look may not always reflect the way I truly feel about something on the inside". Others described how they felt emotions and empathy strongly and deeply, but lacked the ability to express this, both verbally and non-verbally.

Some people who had trouble with eye contact or understanding body language also expressed that missing social cues does not make them less empathetic. They just have a greater need for verbal, clear communication about what is going on inside the other person.
 

6. We mean EXACTLY what we say

Neurotypical people speak in code language. There can be hidden messages within anything that is said. A non-autistic person may be quite fluent in decoding what's said based on context, social norms, body language or tone of voice, but autistic people are often not.

I was a little surprised to see how common this theme was in our responses, but of course it makes complete sense. The literal thinking that's often associated with autism can take many expressions, from challenges with metaphors or sarcasm to general problems with following conversations. Indeed, some participants wished that others could understand how difficult it was for them to understand social communication, and some wished that their friends could help out a bit, by explaining jokes and making sure to be clear.

But what came out strongest in this particular questionnaire was that many autistic people strongly prefer straightforward communication without any hidden messages or hints. Of course, an honest, logical and literal communication style could be seen as a very efficient way of communicating. There is no doubt that indirect communication between non-autistic people cause frequent issues and pent-up emotions caused by misinterpretation of "between-the-lines" messages.

What autistic people in our questionnaire wished that neurotypicals would understand, was that they mean exactly what they say and nothing else. A frequent experience and a cause of great pain was that non-autistic friends or co-workers would respond to things they hadn't said. People would unpredictably react to messages that they assumed were hidden within the sentence.

Some examples:
 

"Why /.../ is the world built on lying? I don't want to lie. I don't want anyone to lie. It is such a sick point of view for NTs to think lying is normal and they require it of everyone."
"I genuinely have no agendas, no subtexts, and when I say something, I only mean what I said, without any implications, or unspoken intentions."


Navigating this minefield where anything you say could be interpreted as something completely different shouldn't just be the autistic person's responsibility.
 

Other attitudes

The themes above were the most dominant, but of course many mentioned other things, like wanting their sensory issues to be understood, stimming to be socially okay, or melt-downs to be accepted for what they are.

We also had some responses that overtly deviated from the patterns above, like these:
 

"I don't think they can. I think it's my responsibility to learn how to adapt." (woman)
"/.../I really just prefer being alone. I'd like people to understand that I am happy alone." (woman)
"They don't have to, acceptance is the key." (woman)
"I couldn't care less what other people think or understand, it means absolutely nothing to me." (man)
"I used to but recently not bothered, age closes many gaps." (man)

 

Thanks for reading!

Coming soon is a questionnaire about stimming in women, as we aim to reach a better understanding of autistic females. With a similar goal, we'll put out a questionnaire about experiences of childbirth for autistic women within a couple of months. Other studies are in the pipeline too!

Sign up here if you want invitations when a study comes out (a few times per year).