Delays in Autism Assessment are not just frustrating they can be harmful.
Carolyn Hart 2021
In 2019 The British Medical Association published a report entitled, ‘ Failing a generation: delays in waiting times from referral to diagnostic assessment for autism spectrum disorder.’
At that time, it was estimated that in the UK, there were 143,500 school-aged children with autism requiring special educational needs support in school. Yet it is not uncommon to come across children who in later childhood or adolescence, display behaviours and difficulties commonly found in children with autism, but have never been assessed for the syndrome.
This is particularly the case for girls who may get a diagnosis for ADHD and or sensory processing issues first. But ADHD is frequently present alongside autistic features whereas sensory processing difficulties are considered a symptom of autism. It is often only when these children start to struggle with the combined social and academic pressures of school that it can become apparent that there may be further issues. Whilst these initial diagnoses may not be inaccurate they do not paint a full picture and may delay getting a diagnosis of autism by 2 to 3 years. On top of that, NHS statistics in 2019 showed that it takes up to 2 years between referral and start of an assessment for autism in parts of the UK.
For girls, in particular, part of the problem seems to be that the diagnostic model is based on symptoms common in boys with autism. In 2015 a study at Stanford University found that repetitive behaviours, such as hand flapping, are less common in girls than boys. Sometimes it is difficult for teachers and other professionals to spot signs of autism in girls, as they tend to be better at masking their symptoms through controlling their behaviour in public.
Stimming is an example of how girls adapt to socially acceptable behaviours. Many people on the autistic spectrum stim as way of blocking out unwanted stimulation and to regulate their own excitement or stress. Girls learn not to flap their hands, pace or constantly flick their fingers. Instead, they use less obvious ways to stim, such as twisting their hair, tapping a pen on the desk or doodling. These behaviours are not disruptive in class and if they are noticed, are likely to be attributed to a short attention span.
Confusingly, some girls on the autistic spectrum seek crowds and prefer to be amongst many people rather than in a quieter less stimulating environment. This is not because they seek relationships with these people, but because it is easier to appear to be ‘fitting -in’, whilst getting lost in the crowd.
If you never quite get what’s going on, you are likely to become anxious and attempt to ‘fit-in’ by imitating others. Not only is it exhausting, but you also become a target for bullying. As hormones ‘kick -in’, adolescent girls with autism are particularly vulnerable to bullying and sexual exploitation. Some young women are so keen to be accepted they do not realise when they are being manipulated or abused.
Unfortunately, occasionally, even when parents or carers suspect autism because the behaviours are not apparent in school, parents are disbelieved.
Girls on the autism spectrum, of average or above-average intelligence, tend to be noticed at school for difficulties in class, such as lack of attention, disengagement, not reaching their potential or depression.
Diagnosis can help by enabling greater access to services at school via an Education, Health Care Plan (EHCP). The plan lays out the needs of your child and details the support agreed on. Should your child move school this document goes with them. A diagnosis also helps by providing a framework for understanding behaviours and developing strategies for everyone to cope better.
Having received a diagnosis, the terminology used to talk about autism can be confusing. People talk of severe and mild forms of autism and readily interchange these concepts with high functioning and low functioning. Autism can affect individuals with both below-average intelligence and above-average intelligence. It is the impact that the level of autism has on daily life, that determines the severity of the autism. It is possible to have a learning disability and autism, where the effects of autism have little impact on daily functioning. Likewise, it is possible to have above-average intelligence and achieve academically, but due to autism, suffer acute anxiety. In this case, the effects of autism greatly impact daily life.
Delays in diagnosis can cause great stress for families especially if children take their distress out on themselves through self-harm and harbour thoughts of suicide. Delays in diagnosis also mean missing the opportunity for early intervention in social skills and with schoolwork. It is much harder to ‘catch-up’ when damage to self-esteem has already occurred.
Our children should be entitled to timely diagnosis and support so that they can reach their full potential. This requires more resources and greater transparency on the data concerning waiting times between referral, assessment and diagnosis. Of course, a diagnosis is not an end in itself but should open doorways to targeted support.
References
British Medical Association 2019. Failing a generation: delays in waiting times from referral to diagnostic assessment for autism spectrum disorder.
https://www.bma.org.uk/media/2056/autism-briefing.pdf
Stanford Medicine News Centre 2015. Girls and boys with autism differ in behaviour, brain structure.