Why do children with autism get missed?

As part of my work as a therapist and coach, I spend a great deal of my work working with children and/or their parents who require autism assessment. Many children are diagnosed with autism by age 5, however, for some of these families, these assessments come after the age of 12, when many children have struggled to have their needs met. Frequently, I meet adolescents who require assessments, who have not been picked up at 17-19. In this article, we will explore some (not all) of the reasons why children so often do not receive the assessments, strategies and support that they deserve and afford them more opportunities moving forward.

What is autism?

Autism is a neuro-developmental disorder, which was first recognised by Kanner in 1943. Autism causes differences to the neurodevelopment and brain connectivity of children and is divided into different types:

• Autism Spectrum Disorder (ASD)
• Asperger’s Syndrome (now referred to as high functioning autism)
• Pathological Demand Avoidance (PDA)
• Childhood Disintegrative Disorder (CDD)
• Pervasive Development Disorder (PDD)

Autism is a spectrum of closely related conditions which have shared symptoms. Every individual will present with their own combination of symptoms and the variation is diverse. Children, adolescents and adults with autism are described as being neurodiverse.

 

Is autism the same in everyone?

Those individuals with autism are described as being on a spectrum, as their symptoms and presentations will vary. Autism can be mild, moderate or severe. Early signs of autism include:

Children with autism are seen to be the group most likely to be diagnosed in childhood, as their symptoms are most noticeable. However, this is often not the case, and frequently parents and children have to fight for support and recognition.

Further, some children have high functioning autism, formerly diagnosed as Aspergers, and this often is not identified as whilst they frequently share the coordination and fine motor skills difficulties of children with autism, their language and learning development is often not affected, and many present with higher than average intelligence but can frequently struggle with social relationships and emotional regulation.

 

Why are children missed?

So why do children get missed? Some of the reasons that children are missed from diagnosis include:

1.Girls present differently – It was originally believed that only boys were able to have autism symptoms, and therefore, when diagnostic thresholds were created they covered symptoms seen in males. However, it has since been identified that girls also have autism but the thresholds still show a preference for boys, and therefore females sometimes do not meet the requirements for diagnosis, causing delays.

2. There are other conditions present – In many cases, children with autism symptoms are missed as they also present with other conditions or disorders such as ADHD, dyslexia or dyspraxia, in other cases they may have a diagnosis of anxiety or depression which accounts for ‘some’ of their symptoms.

3.Settings feel that they can cope – In some cases, symptoms are detected, but children are not referred for assessment as their education setting believes that they can meet the child’s needs. However, as the child progresses through school, particularly to secondary school they can find that the support varies greatly and that not all teachers/schools are autism informed. This can create a delay of years before assessment is then completed as a child may only see some staff 1-2 hours a week and therefore is not identified quickly enough. The subsequent delays in assessment timelines can directly impact a child’s needs on a longer timeline.

4. Master maskers – Children with autism, are, as I like to call them ‘Master Maskers’, and frequently, their schools do not see the same symptoms that parents, therapists or afterschool clubs do. Especially in girls,  but also in boys, children learn to mimic their friends and internalise their emotions which spill over on the return home. This often leads to children’s needs not being met and can also contribute to emotionally based school avoidance.

5. Lack of understanding – Frequently, the understanding of autism symptoms is affected by stereotypes of out of date information. This often means that professionals interacting with children do not know what to look for, or do not have the time allocated to them to build strong enough relationships with children to recognise their unique ways of interacting with the world. If the list of symptoms that the professional is aware of caters more to males than females, then children may be missed due to gaps in, or lack of understanding.

6. False understanding – In many cases of children who I meet, their parents have been aware of challenges that their children have experienced before the age of 3, however are put off or deterred from seeking diagnosis as they have been informed that the child’s symptoms are due to their ‘poor parenting’. Many of these parents have been referred for parenting classes and/or subjected to safeguarding referrals due to poor education or understanding of the professionals that they meet or due to diagnostic overshadowing, where the professional is so fixated on what they have seen (or diagnosed) that they become blind to the other factors.

 

What can we do?

As a country, we are continually learning more about autism spectrum disorder, and it’s different impact and presentations on children of different ages, abilities and genders. However, we can all begin by becoming more ASD informed and taking responsibility for improving our knowledge and understanding.

 

Want to learn more? 

If you want to learn more about emotional literacy you can join our Level 4 training (here) or keep an eye out for our online emotional literacy courses coming soon (here).

 

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Further help 

For more articles about mental health visit – ARTICLES 

To learn more about child and adolescent mental health visit – COURSES 

For resources to support child and adolescent mental health visit –RESOURCES