Do you suspect your daughter has autism? Autism in girls is harder to spot, so we asked the National Autistic Society to give us the low down.
What is autism?
Autism is a lifelong disability that affects how people communicate and interact with the world. At least one in 100 people are autistic, which means more than 700,000 people in the UK.
Autism is a spectrum condition and affects people in different ways. Like all people, autistic people have their own strengths and weaknesses. Some of the main signs that a child may be on the autism spectrum include:
- not drawing their parents’ or others’ attention to objects or events, for example pointing at a toy or a book, or at something that is happening nearby (or a child may eventually do this, but later than expected)
- carrying out activities in a repetitive way, for example always playing the same game in the same way, or repeatedly lining toys up in a particular order
- resistance to change or doing things differently
- emerging difficulties with social interaction and social communication
- behaviour such as biting, pinching, kicking, pica (putting inedible items in the mouth), or self-injurious behaviour
Recognising autism in girls
Attitudes towards autism and gender are changing, although we still have a long way to go. Many autistic women and girls are still struggling to get the support they need.
Historically it was thought that women and girls were less likely to be autistic because the research indicated that the numbers of females affected was lower than the number of males when looking at population samples. However, our understanding of autism, as a broader spectrum of strengths and difficulties, has meant that we have become better at recognising autism in women and girls.
Recent research has highlighted the challenges in identifying autism in women and girls. It’s now recognised from research, clinical practice and anecdotal reports that many autistic females and other people who demonstrate less obvious autistic traits, often miss out on an autism diagnosis or can be misdiagnosed with other conditions.
The difference is mainly down to the more ‘subtle’ presentation of autism in women and girls. On average, autistic women and girls tend to be more interested in the social world than autistic boys and men. Some autistic women and girls can feel that they are masking their autism to try and hide the fact that they feel different. They may copy the behaviour of those around them and can be exhausted by the constant effort to ‘fit in’. Some may be unaware that they are masking in the first place. This more subtle presentation of autism is also a major barrier to clinicians and other professionals recognising that a girl might need an autism assessment.
Is autism as common in girls as it is in boys?
More men and boys are currently diagnosed as autistic than women and girls. The gender ratio is still unclear but various studies, together with anecdotal evidence have come up with men/women ratios ranging from 2:1 to 16:1.
Why are girls often under-diagnosed?
There are a number of theories that might explain why more men and boys than women and girls get an autism diagnosis.
These include research that suggests that they present differently and are less interested in stereotypical autistic subjects like trains, maths or tech. Their particular interests – for instance being devoted fans of a celebrity or band – can easily be taken to be that of any other girl.
This research suggests there is a ‘female autism phenotype’, which doesn’t fit with the profile usually associated with men and boys on which assessment tools are usually based – leading to under diagnosis in women and girls.
Other studies suggest that women and girls are better at masking or camouflaging their difficulties and that autism traits in girls are under-reported by teachers, who are often key to identifying girls at an early stage and referring them on for diagnosis.
What is the cost of a misdiagnosis?
Autism can be misdiagnosed as another neuro developmental disorder, like ADHD or a mental health disorder, like borderline personality disorder. This can mean that autistic women and girls can end up having therapies or treatments that are not appropriate for their needs. This can be confusing and harmful in the long term as they struggle to get the right support they need at the right time and can also end up with them feeling misunderstood and potentially traumatised by having the wrong kind of help. The costs of a missed diagnosis are many.
An autism diagnosis can be life-changing. It can explain years of feeling different and help unlock educational and employment support. Without a diagnosis autistic people will go through their lives unable to understand who they are and why they seem to struggle with things others seem to take for granted. This can lead to mental health problems such as depression, anxiety or eating disorders.
What should I do if I suspect my daughter is autistic, how do I get a diagnosis and at what age will this all happen?
The characteristics of autism vary from one person to another.
Children can be diagnosed as autistic when they’re quite young, in some cases from the age of two. But not everyone is diagnosed that early in life. It’s quite common for a child to not get their diagnosis until they are older, or even an adult, particularly if they don’t have accompanying learning disabilities.
But if you suspect your daughter might be autistic, discuss this with your GP and/or health visitor or school nurse. Take along a list of the behaviours and characteristics that make you think your child might be autistic. You can find some useful diagnosis information on the National Autistic Society’s website.
Your GP or health visitor will consider your concerns about your child and may ask you some more questions about your child’s behaviour and development. Then, if they believe it is appropriate, they will make a referral for a specialist assessment of your child.
For young children an assessment will usually be through the local community paediatric service. For older children this is likely to be through the local Child and Adolescent Mental Health Team. The initial assessment should occur within 18 weeks. If the clinician thinks there are significant indicators of autism, then they will refer on for a full assessment. This is the next stage in the pathway and ideally provides a clear outcome of either diagnosis of an autism spectrum disorder, or confirmation that the child is not autistic.
The waiting times for this second assessment stage are unfortunately usually much longer, depending on what the local provision of services is like. In the meantime, your child can still be referred for specialist support, including speech and language therapy, occupational therapy, or early years education. The interventions these services can provide will help you to better understand your child’s needs and how to support their development.
Growing up on the autism spectrum can be difficult but we’ve seen again and again how awareness, understanding and early support can make all the difference.
Article by the National Autism Society, autism.org.uk