For many families, an autism diagnosis begins with a child.

Perhaps a son or daughter has been struggling at school, finding social situations exhausting, or experiencing the world differently from their peers. An assessment provides an explanation for some of these differences, and suddenly things that once seemed confusing begin to make sense.

But sometimes, a child’s diagnosis leads to another question:

“Could I be autistic too?”

This is a question increasingly being considered by adults who recognise their own experiences in their child’s diagnosis. New research and a growing understanding of the genetic basis of autism are helping us understand why autism can appear across generations of a family.

The National Autistic Society (NAS) has recently updated its guidance to state that ‘autism is genetic‘. This follows a review of 99 sources of evidence, including 83 research papers, undertaken by its evidence and research team.

The NAS explains that most autistic people are autistic because of genetic factors, and that autism often runs in families. Importantly, however, there is not one single “autism gene”. Thousands of genes can contribute to whether someone is autistic, making the genetics of autism complex. This is consistent with decades of research into autism and families.

What does “genetic” actually mean?

It is important not to misunderstand what researchers mean when they say autism is genetic. NAS confirms that there isn’t a simple genetic test that can tell someone whether they are autistic. Autism doesn’t result from a single gene, and genetic testing cannot currently be used to diagnose autism. 

Instead, autism appears to involve complex interactions between many genetic variants. Some genetic changes can arise spontaneously rather than being inherited, and other factors may also contribute to the likelihood of autism in some circumstances. So, describing autism as genetic does not mean that parents have caused their child’s autism, nor does it mean that an autistic parent will necessarily have an autistic child.

Genetics are complicated. Families are complicated too.

When a child’s diagnosis makes a parent look at themselves differently

One of the less obvious consequences of an autism diagnosis in childhood can be self-recognition for parents. A parent may have spent decades feeling that certain things were simply personal differences or quirks.

Perhaps they have always found social situations difficult. Maybe they rely heavily on routines, become overwhelmed by noise or busy environments, or need significant time alone after socialising. They might have developed ways of coping that have helped them navigate school, university, relationships and employment without ever considering autism – then their child is assessed.

As the parent learns about autism, they may start recognising familiar experiences from their own childhood and adult life. This can be particularly significant for adults who grew up at a time when autism was less widely recognised or was associated primarily with children with more obvious support needs. For some adults, learning about autism in their child can be the beginning of recognising that their own experiences may warrant further exploration.

Why might autism go unrecognised until adulthood?

Autism doesn’t suddenly develop in adulthood. An autistic person has been autistic throughout their life, although they may not receive a diagnosis until much later. There are many possible reasons why someone may reach adulthood without an autism diagnosis.

Some people learn to consciously or unconsciously mask autistic characteristics. Others may have developed effective coping strategies, particularly in environments where their differences were not recognised as signs of neurodivergence.

Some adults may also have received other explanations for their experiences over the years. For women and girls in particular, increasing awareness of how autism can present differently across individuals has contributed to more people being identified later in life.

This means that when a child receives an autism diagnosis, it can sometimes provide parents with a new framework through which they can understand their own experiences.

An autism diagnosis can be a beginning, not an ending

For a child, receiving an autism diagnosis can help families understand their needs and identify appropriate support.

For parents and other relatives, it can sometimes prompt a different kind of journey: looking back at their own experiences with a new perspective.

Some adults describe a sense of recognition when they learn more about autism. Experiences that previously felt disconnected can begin to form a pattern. For others, the process may simply lead to greater understanding of themselves and their family, without resulting in a diagnosis.

Either way, knowledge can be valuable.

As the National Autistic Society notes, understanding the genetic basis of autism can help challenge misconceptions about its causes. It can also help move conversations away from blame and towards understanding, acceptance and appropriate support.

What should you do if your child’s diagnosis has prompted questions about yourself?

If your child has recently been diagnosed with autism and you have started wondering whether you might be autistic too, you are not alone in having that question.

You might begin by learning about how autism can present in adults and reflecting on your own experiences across different stages of your life.

Consider:

• How did you experience friendships and social situations as a child?
• Did you feel that you had to consciously learn social rules?
• Have you always had particular sensory sensitivities?
• How do you respond to changes in routine or unexpected events?
• Do you have particularly intense interests or areas of expertise?

For some adults, finally having an explanation for lifelong experiences can be an important step towards understanding themselves and identifying the support or adjustments that may help.

At Portland Assessments, we are experienced in assessing adults and those who are questioning whether an autism assessment may be right for them. Please get in touch if you are experiencing these questions, and we would be happy to talk to you about the right next steps for you.

Autism is complex, and genetics are only part of that complexity. But we now have strong evidence that genetic factors play a major role, and that autism can run in families.

The National Autistic Society’s full discussion of the evidence can be read here: Autism is genetic – and why this information matters now