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Many of us at Autistic Parents UK only discovered we are Autistic in adulthood, often after our children were identified. We frequently get contacted by parents who are currently going through this process and, although our main focus is providing peer support for parents who positively identify as Autistic (including self-diagnosis), we’ve created this blog post to signpost anyone who finds themselves in this situation to helpful resources.
If your child is the first one in the family to be identified as Autistic it can be surprising and confusing. You may not have realised there was anything unusual about your child’s behaviour because you did those things when you were little. It can be a surprise to realise things that are normal for you, are actually autistic traits. Maybe you see your child struggling and you can relate to them more easily than others, because you struggle in similar ways.
This then leads you to question: Am I Autistic?
What is Autism?
The first thing you need to understand is that everything you think you know about autism is probably wrong.
Currently, there is no scientific consensus on what autism actually is. There is no blood test or brain scan that can identify an autistic person. The medical definition of autism, as found in diagnostic manuals, is based on observations of autistic people and how they behave when they are stressed. Discussions around autism have been dominated by non-autistic professionals and parents, which has created a very negative view. Mainstream knowledge about autism is based on outdated stereotypes.
Today, thanks to the work of autistic adults who have shared their lived experience, we have much more information and understanding of what being autistic actually means. We know that autism is not an illness or tragedy, it’s just a difference in the way someone experiences the world and communicates with others.
Autism Epidemic?
Rates of autism diagnosis have drastically increased in recent years. This is not because there are more autistic people than there used to be, it’s simply due to the fact that medical professionals are slowly getting better at identifying us. The most recent diagnostic criteria for autism were published in 2013. Professionals have also started to realise that girls and women can be Autistic too. These factors mean that many people who would have been missed in childhood are now getting diagnosed as adults.
Heritability of Autism
We know that autism has genetic factors and tends to run in families. A 2017 study showed the heritability of autism to be 83%. A family history of autism means you are more likely to be Autistic yourself. If you have a child diagnosed as Autistic, there’s a high probability that you are too.
Online Tests
There are many online tests for autism that can seem appealing because they are quick and seem to offer an easy answer. If you decide to take online tests or quizzes, be aware that these tests are generally created by non-autistic people and are often based on stereotypes of autism, such as being obsessed with trains or being brilliant at maths. Some of the questions can also be ambiguous and open to interpretation. While they can be helpful to get an idea of whether you have some autistic traits, you can score highly on a test and not be autistic, and you can also score low on a test and still be Autistic. They can’t tell you for definite whether you are Autistic.
Autistic Lived Experience
What can be more helpful is learning about the experiences of other autistic adults, and seeing if they resonate with you. These stories share what it actually feels like to be Autistic, rather than what it looks like to non-autistics. Following the #ActuallyAutistic hashtag on social media is a great way to start connecting with and learning from people who are Autistic themselves. There are also many online groups for people who are exploring whether they could be Autistic, as well as blogs, vlogs, podcasts, and books based on lived experience.
Formal Diagnosis
If you have been thinking about whether you could be autistic for a long time, you may be considering whether to go through the assessment process to get a formal diagnosis. Whether you decide to pursue this or not is entirely up to you. There are pros and cons to getting a formal diagnosis and there are barriers to getting a diagnosis which may make it more difficult for some people. At Autistic Parents UK we feel that self-diagnosis is valid. If you identify as Autistic and you are a parent in the UK you are welcome to access any of our peer support services.
Resources to Explore
Here are some resources our volunteers at Autistic Parents UK found helpful when they were exploring whether they may be Autistic. These links contain a wealth of information and are all created by autistic people. Whether you are autistic or not it’s always worth taking some time to get to know yourself better and you’re going to learn a lot about autism too!
Website
eBook
YouTube
Blog Post
Podcasts
Zoe is a late identified autistic parent to 2 unschooling neurodivergent children, writing about autistic identity and culture. Find her on Medium https://medium.com/@zoewilliams_2443 and Mastodon https://cupoftea.social/@rekindled.
Photo by Johannes Plenio on Unsplash
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