Did you know it takes one to two years to get an Autism diagnosis?
Learn why often receiving an Autism diagnosis for your child takes so long.
Find out the steps and reasons for the complicated process of being diagnosed.
You can read about how it all works in this post.
What is Autism?
Autism, known as Autism Spectrum Disorder (ASD), is a developmental disability.
Autistic people may find social interactions and communication difficult and have repetitive and restrictive behaviours and interests due to their brains working differently.
This very short description doesn’t do Autism justice because it is a complex condition.
Most of the time, it is diagnosed in childhood. It is often when the first signs appear.
Nearly everyone who received an Autism diagnosis for them or their child can agree that it is a very long process.
Below you can read about seven reasons why it takes so long to get the diagnosis for your child.
7 Reasons it takes so long to get an Autism diagnosis for your child
1. It is a complex condition with different symptoms
Autism is not easy to define or describe with just a few words.
It is diagnosed based on several symptoms, some of which must be present, and others might or might not be there.
Symptoms must cover TWO areas.
The first includes problems with social communication and interaction.
The second area covers restrictive and repetitive behaviour patterns.
Let’s break it down:
Social communication deficit symptoms needed to diagnose Autism:
- Language– the child may lack it (might be “non-verbal”), or their language might be delayed. When we talk about language, we think about receptive and expressive language. Receptive is what the child understands, and expressive is what the child produces, simply, their speech. (Learn how to help your child with speech and understanding here).
- Non-verbal language- there is a lack of or delayed and inappropriate facial expression, body language, gesture, or eye contact.
- Reciprocity– a child might have a problem with initiating and following conversation and its unwritten rules. They might have problems with taking turns in a conversation.
Restrictive and repetitive behaviour problems are :
- Being obsessed with specific topics or objects or places.
- Stereotyped, self-stimulating behaviours like stimming, echolalia (repeating words or phrases), or lining up objects. (You can read about sensory processing here).
- Obsession with rituals and routines.
As you can see, the symptoms, although thrown in two separate categories, might be different from each other.
Not all of them have to be present, and there is guidance and tools to establish what number of symptoms and from what categories are needed to meet the diagnosis.
2. Different diagnostic guidance
We already established that Autism is complex, but professionals don’t go around diagnosing whatever they feel might be Autism.
They must adhere to guidance.
Simplifying it drastically, they take the guidance containing the symptoms and tick the boxes. Then they check if they have the required amount of ticks to establish the diagnosis. In reality, this process is quite long and complex.
The guidance, the manual, and the essential reference all professionals turn to is the DSM-5.
DSM-5 is the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.
Another one that professionals use (instead of or together with DSM-5) is ICD-10.
ICD-10 is the International Classification of Diseases 10th Revision.
Numbers 5 and 10 show that these documents are revised and edited every few years.
For example, the previous version of DSM had Asperger’s syndrome as a separate condition. But today, it no longer exists, and people diagnosed with Asperger’s syndrome are now considered to have Autism.
Since the manual’s last revision, the Autism Spectrum has become more extensive and includes more symptoms of Autism.
There are several essential requirements for ASD diagnosis.
I mentioned the first two: deficits in social communication and restrictive and repetitive behaviour.
I will discuss other requirements below.
The number of requirements makes the process of getting a diagnosis long.
3. Symptoms must persist
Both DSM and ICD guidance state that not only does the child have to present a certain amount and type of symptoms, but they also have to persist.
The symptoms have to be ongoing and last for some time. Usually, it is at least six months.
So if your child has just started presenting unusual behaviour, the doctors will want to wait to see if the behaviour stays, changes or goes away.
It may make the whole process longer.
But children develop at a different rate, and sometimes they might seem behind their peers with their development but later quickly catch up.
The doctors want to rule this out and wait and see if the symptoms persist.
4. Symptoms must cause impairment
As you can see above, there have to be certain symptoms, and they have to be ongoing. But also, according to DSM-5, they must cause significant impairment to the person’s life and functioning.
What does it mean?
Have you heard a proverb, ‘if it ain’t broke, don’t fix it?
If the symptoms do not cause the child problems and do not interfere with their daily life, they might be just signs of something else.
Or maybe this is the way your child develops.
But, yes, a seven-year-old, completely non-verbal child will have their life affected because of their communication problem.
This period of assessing how symptoms affect someone’s life may make the whole diagnosing process longer.
5. Different (and many) people are involved in the diagnosis
Another significant reason why the Autism diagnosis takes so long is the multidisciplinary approach to diagnosing Autism.
What does it mean?
It takes various professionals and specialists to conduct different assessments, observations, exams or interviews to establish a diagnosis.
Who can participate in diagnosing Autism?
- Developmental paediatrician– a doctor that specialises in child development and can recognise if something is wrong
- Child psychologists will often observe a child at home, school or clinic and carry out tests (very often play-based) to assess a child
- A child psychiatrist is another doctor that specialises in mental health disorders or issues
- Speech therapists can help assess communication problems that play a significant role in diagnosing Autism
- Paediatricians or general physicians conduct assessments or exams necessary to rule out different possible reasons or explanations of symptoms and behaviours
- School staff (teachers, SENCO) can provide their accounts and observations of the child. (Read about how the school can support autistic children here).
- Parents and carers– no one knows the child better than them
Not all of them have to be involved. It will depend on the symptoms your child presents and your location.
Things are done differently in different places.
They may all work together as a team coordinated by one of them, usually the developmental paediatrician.
This collaboration and numerous assessments and checks will extend the diagnosis process.
6. Different assessments in different places
The doctors and other professionals involved must carry out different tests, exams, interviews, and assessments to diagnose your child.
They may do it over several appointments at different clinics.
They may also want to see your child “in action”.
The educational psychologist or a specialist teacher may come to see your child in school.
Someone else will visit your child at home to see their everyday play and interactions.
Your child might see a speech therapist or have their hearing checked, for example (to rule hearing problems out).
Different doctors or specialists may also examine them.
Autism is often present along with other conditions called comorbidities.
Some autistic children might have intellectual or developmental delays, so the doctors must also look at them.
All these appointments, checks, visits, talks and sessions will happen over time, which is why it takes longer to get an autism diagnosis.
7. Other things must be ruled out
Another requirement to diagnose Autism that will contribute to long waiting time is that the other possible reasons and causes of the symptoms have to be ruled out.
DSM-5’s last criterion for the diagnosis is that symptoms cannot be explained by something else.
These other conditions can be developmental delays or genetic problems, for example.
A child can have communication problems and be non-verbal because of a developmental delay or deafness.
In this case, it wouldn’t be Autism.
Autism often comes with coexisting conditions (comorbidities).
A person might have ADHD, developmental delay, or gastric problems together with Autism.
The doctors may also want to address it in the process, which adds to the time it takes to get the Autism diagnosis.
You can see that the process of ruling out other conditions may take a long time as it will involve different tests, checks or exams.
It also makes the process of getting the diagnosis so long.
Deficit model controversy in Autism diagnosis
I have to point out that diagnosing process and the language used in the diagnostic guidelines might be a bit controversial to some people.
People with Autism and their advocates often don’t agree with the so-called “deficit model” of portraying Autism.
DSM talks about impairments or deficits, which may sound negative to someone.
Many Autism advocates see Autism not as an impairment, problem, or issue that needs fixing but as a difference.
Some people with Autism don’t want to be “fixed” or cured or to have therapy because they do not see Autism as an illness or a problem.
It is essential to keep it in mind.
People’s approaches and opinions may vary, but the voices of those affected should always be heard and considered.
Is Autism being overdiagnosed?
Some people might argue that Autism is overdiagnosed.
With 1 in 54 diagnosed with Autism, it seems like we all know someone affected.
There are different reasons why so many people have been diagnosed with Autism lately.
First of all, it is the DSM again.
With the last update in 2013, the criteria to meet autism diagnosis changed. Now the spectrum covers even more symptoms.
It is because we know more about it now.
More conditions recognised as something else before now qualify as Autism.
Another reason might be that growing Autism awareness makes people more likely to spot the signs of Autism early.
I hope you can understand now why it often, if not always, takes a long time to get an Autism diagnosis.
It is a complex condition that requires assessment and analysis by various professionals.
It is done over time, on multiple occasions, and is all part of the process.
And what are your experiences with obtaining an Autism diagnosis for your child?
Let me know in the comments.
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