By Autistic Phoenix
FAQ: Could I be Autistic?
This FAQ page is intended to provide brief answers to questions that you might be asking yourself if you think that you might be autistic.
I am writing here for people like me who have come to that realisation late in life. I’ve written some examples below about how you might have come to question that there might be something about you that is causing you ongoing distress & that hasn’t yet been fully explained. These examples are *not* the diagnostic criteria for Autism, but are just examples of the sorts of things that might have led you here.
- One or more episodes of feeling exhausted and wanting to give up, or hide from life, possibly diagnosed as depression or stress, that don’t seem to have any particular cause, or that you can relate to being “finally brought on” by a certain event, or just feeling more and more exhausted as time goes on.
- Anxiety when you’re in social situations, or imagining social situations. A social situation isn’t necessarily being face to face; it can be when you’re “involved” in something on social media for example, and you’re anxious about what you should say to others.
- Getting easily stressed and/or exhausted when you *are* face to face with people. Perhaps getting very irritated by “loud” people, or just wishing that people would leave you alone; craving a quiet place.
- Repeatedly “getting stuck in your thoughts” in a way that causes you distress. For example, imagining things that you don’t want to imagine, or going over past events and getting anxious about whether or not you did the right thing. Perhaps you’ve been for therapy in relation to this, which may or may not have helped.
- Difficulties with sensory things like sounds, light, touch, tastes, smells, that don’t seem to bother other people.
- A difficulty with talking about your feelings, or even knowing yourself how you are feeling about something.
- People keep telling you “You think too much!”, “You need to get out more!”, “You’re too sensitive!”, “You’re just you! Everyone is different!”, “Stop worrying about it!”
- You find that when you’re absorbed in doing something, all of your worries go away and you zone out of what’s going on around you (physically, emotionally, circumstantially). It’s your favourite place.
- When you’re out an about, you spot things that others don’t notice. They aren’t even interested when you point these things out. Perhaps you’ve learned to keep them to yourself.
Note that the above is not a complete list, and again is not a set of diagnostic criteria; it’s just a lead-in.
Q: Where can I get a good online test for Autism?
A1: The AQ50.
If you ask a bunch of autistic people, most would probably point you initially to the test called the AQ50 – a fifty question test that calculates your Autism Quotient (AQ). There are many places online to get this, and putting AQ50 into your favourite search engine will provide lots of links along with more details about it. It won’t take you long to complete, so if you’re wondering about it – go and do it now!
A2: The EQ50.
The EQ50 is probably the second test that autistic people would point you to. Like the AQ50, it’s a 50 question test and available in lots of places online. This reports on your Empathy Quotient (EQ50).
Q: I’ve taken the AQ50 and EQ50. Are there some other tests that would give me some more detail?
A: Yes, quite a few
There are quite a few other tests, again available online, that would give you a different perspective and/or highlight some specific areas. These are:
- The Aspie Quiz at rdos.net. If you like detail and graphical output, and are willing to answer the hundred or so questions, go and have a look. I found this one a great way to compare my profile with other people, including people I knew to have autism and people I knew not to have autism.
- The Adult Asperger Assessment at Autismresearchcentre.com. This one is presented in an Excel workbook and is designed to be “administered” by a clinician. You can do it yourself, but it needs a bit of thought when using it because you have to pretend to be the clinician and lock/unlock sheets etc. However, it is very comprehensive and, if you’re in the UK, should be recognised by your GP as it is recommended by the NICE guidelines.
- Also at Autism Research Centre, is a huge list of other downloadable tests: https://www.autismresearchcentre.com/arc_tests
Q: I’ve taken the tests and score way above / way below the “threshold”. Does this mean that I’m definitely / definitely not autistic?
A: Not necessarily, but maybe
This is where things get a bit more subtle. None of the tests is perfect, and each one can suggest that you’re autistic when you’re not, and indicate that you’re not autistic when you are. Experts in diagnosis quantify these aspects of tests by using these two similar-sounding terms:
The more sensitive a test is, the more likely that it will indicate a “yes” for every person who has the condition being looked for. Unfortunately, a test with 100% sensitivity (i.e. one that would leave no-one falling through the cracks) is likely to have very poor specificity. This means that the test would give a “yes” to many people who *didn’t* have the condition (the test is not “specific” to only those who definitely have the condition). In the extreme, you could imagine a test with 100% sensitivity and 0% specificity as one where they simply throw your answers in the bin and say “Yes, you have X” to everyone!
Real-world tests are designed to achieve an optimum balance of sensitivity and specificity. This is particularly tricky in the case of tests for autism, because understanding of the condition is forever evolving.
Q: I always do / notice / struggle with X. Does this mean that I’m definitely autistic?
A: Not necessarily, but maybe
One of the difficulties with diagnosing autism is that many of the signs of autism can also be signs of other conditions, or no condition at all. For example, having difficulty with holding conversations in crowded & noisy places can be a result of having autism, but can also be a result of hearing impairments. As another example, being obsessive about the way a room is furnished and arranged and agitated if someone disturbs it, can be a sign of autism, or could equally indicate an obsessional disorder, or simply indicate that you’re fussy about your environment!
This is why the diagnosis process puts a lot of effort into something called differential diagnosis; before a diagnosis of autism is made, a lot of checking will be done to make sure that the signs don’t indicate something else.
Q: Isn’t everyone a bit autistic?
I’ve put this question here because the answer is strongly related to the answer above; many people will have something about them that is common to them and another person with autism, but that doesn’t mean that they are autistic too. This is still the case even if the thing they have in common is a feature that is more prevalent amongst autistic people than in the general population.
It’s easy to fall into the trap illustrated by the following statement: “I’ve noticed that many cats have blue eyes, and I have blue eyes too, therefore I must be a cat!”
Or, to make it less extreme and illustrate how easy it is to draw the wrong conclusions, “My friend has been diagnosed with autism, and he was telling me yesterday how he gets tired at parties so much more quickly than everyone else and just wants to go home. I get this too so I think that maybe I’m a little bit autistic.” The explanation here is that the autistic person’s un-diagnosed friend could indeed be autistic, or, simply doesn’t enjoy parties and isn’t getting enough sleep!
I could list examples like this for all of the signs of autism & the same logic would apply. Autism is a condition that results in a defined collection of signs all present in the same person, not just one or two of them. In an autistic person, autism is the cause of these signs: in other people, it’s something else or just random.
As a final example, no-one can be a little bit pregnant, but many people can experience at least some of the signs of pregnancy such as nausea, weight gain, tiredness, back ache…….. And some people can experience a little bit, or a lot of, these signs. In some people, this is because they are pregnant, but in others it’s something else or nothing at all.
There are some excellent resources around that explain how autism can be a spectrum at the same time as being separated from its opposite in a binary yes/no way. For example: