The following is my opinion as a parent of a child with autism who has gone through a diagnosis journey and of a person who hears a lot from other parents and adults about how hard it can be to get a diagnosis if they request one.
People seek diagnosis at different ages. You have tuned in parents who seek help with their 2 year old through to those in retirement who wonder if they have autism because they have learned about it and can match many of their attributes to it. The difference here is that adults can seek diagnosis for themselves whereas parents have to advocate for their children not knowing if the children themselves will want to know about or use the diagnosis or not when they are older.
It has frustrated me for many years that diagnostic services vary so much across Scotland. NHS services, charities and private consultants are among the many different agencies that offer diagnosis. There are guidelines in Scotland for what an Autism assessment and diagnosis should look like. This should be helpful for those people who are starting their diagnosis journey. It was quoted on the radio this morning that the average person waits 3 years for a diagnosis. I don’t think a diagnosis can be made quickly but adults should be able to get a decision much quicker than this. I can understand that making a diagnosis in childhood should take longer. The key age for symptom observation is age 4-5 so if a parent is seeking a diagnosis when a child is 2 years old then it would be important to observe how that child develops up until the age of 5 before exploring a diagnosis. There will of course be instances where a clear diagnosis before age 5 would be advantageous and in the best interests of the child.
So why does it all take so long? I think one of the reasons is that there is no clear pathway for an autism diagnosis in Scotland. Assessment of autism should be thorough and not everybody with a question about diagnosis would warrant a full assessment. Screening is a very important step before resources are used to complete a formal autism assessment.
Screening for autism should be able to be completed by many different people and be available in a variety of contexts. For example, it could be occupational health service staff or teachers that work with children. Screening does not need to be the work of a specialist service. Children, for example, can be screened for autism by school teachers, playgroup leaders, GP’s, health visitors and parents. Yes, parents can screen and often do. In this modern age, parents and adults have access to everything via the internet and will often search the symptoms they see in their children or themselves. I think this is great and if these people reach the stage of a specialist assessment then they will be armed with lots of useful information and examples to form a basis for the exploration of a diagnosis.
Screening varies and ranges from the internet search described above to formal screening using a standardised screening tool. Good screening by education or health staff would typically include use of standardised questionnaires e.g. the Social Responsiveness Scale. This would usually be completed in a few different contexts. For example, for a child, one might be completed by the parents and one or two would be completed by teachers who know the child well. This would give a picture of how the person is functioning in different environments and the score would indicate whether further assessment is warranted.
Screening questionnaires are also available for exploring a person’s developmental history. Taking this history just means finding out about how a child or adult developed from birth to around age 5, focusing mostly on the year between age 4 and 5. A popular tool is the Autism Screening Questionnaire.
I should say at this point that a person who may have autism would usually have difficulty in different environments rather than just one. For example, a child at school would usually be struggling both at school and at home.
Once the screening process is complete, some people decide not to go forward to the formal assessment stage and this is ok.
So what if a child or adult has been screened and the contextual assessment, developmental history and their current difficulties point towards a formal assessment being useful? This is the bit that a lot of people seem to get stuck at. I think having a clear pathway would make this next stage less of an overwhelming hurdle. Where do people go for a formal assessment of autism? A lot of people seek help from their GP as they see it as a health concern. Some parents turn to their child’s teachers for advice about diagnosis and are directed towards their school Doctor.
There is a risk of subjective opinion influencing the diagnosis journey at this point. For example, there are grandparents who have misconceptions about autism and encourage their sons or daughters not to take things further or teachers who foster a ‘wait and see’ approach towards a child who is struggling. This is frustrating and I believe it influences the path that people then take. We know, through research, that outcomes are much better when a diagnosis is made as early as possible in children and yet a lot of professionals still hold on to the ‘wait and see’ approach. I think waiting and seeing if a 2 year old develops autism is acceptable as they have not yet reached the key developmental stage of age 4-5. I do not see the benefit in a 6 year old waiting for a formal assessment if the screening process has highlighted a need for further exploration of a diagnosis.
Sometimes it is the professionals around a child that may be pushing for a formal assessment to take place but the child’s parents are reluctant or refuse to engage in the process. This is a difficult situation but if screening is done well and the results documented and shared then the subject of diagnosis can be revisited in the future. It is worth mentioning that parents can underscore screening questionnaires because they do not see a problem in their child or are in denial that there is something wrong. It could also be that they do not know enough about symptoms of autism to know what they should be looking out for. Professionals who are asking parents to complete screening questionnaires should inform parents about what this is for and how it may be used so that they can participate as fully as possible.
In order to protect resources and make sure that the right specialists see the right people at the right time, I think it makes sense that screening should be completed in most cases. This protects capacity for the completion of formal assessments. A fast autism diagnosis should not exist. Autism is a lifelong neurodevelopmental disorder for which there is no cure. If autism was my diagnosis then I would hope that this would have been thoroughly assessed so that I had faith that it was correct given the lifelong nature of the disability. Autism is not a physical illness or mental illness but a disability that people are born with. I won’t go into the possible causes of autism but there are many theories.
There are many factors which influence a formal assessment of autism. A few of these are family disruption around age 4-5, parents who can’t remember much of their child’s fourth year due to their own ill health at the time, looked after children who may not have a consistent caregiver to give an accurate history, complex attachment difficulties and co-morbid complex mental health difficulties. Some people identify more than one of these and this has the potential to influence an accurate diagnosis. Sometimes a diagnosis is not clear cut but there are diagnoses which take this into account including Atypical Autism and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS).
Some parents or adults have ideas about which ‘label’ they would most prefer if a diagnosis is to be made. Some parents like ‘Aspergers Syndrome’ as they believe that it gives the impression that their child is cleverer than others, however, that child may remain very socially disabled. I included the word ‘Aspergers’ in my blog title but the term itself is being phased out. It is being removed from the American diagnostic manual and the UK may follow suit. Specialists in autism assessment are now increasingly using ‘Autism Spectrum Disorder’ or ‘High Functioning Autism’ as a diagnosis. I feel that this better reflects the condition and my son and I choose to use the word ‘Autism’ when discussing his disability.
I have a clear idea about what a full and thorough assessment of autism should look like and feel very passionately about this. If a formal specialist assessment is required then it should be done correctly. The assessment should include:
- Contextual information about the person e.g. from teachers, family, the person themselves and observations of the person in the community – this helps to build a thorough profile of the person
- A ‘here and now’ assessment of their current social communication skills – ideally this will be a standardised assessment e.g. the Autism Diagnostic and Observation Schedule (ADOS) - any standardised assessment should be used correctly and fully by a trained professional
- A full developmental history focussing on a person’s early years especially age 4-5 – ideally this should also be a standardised measure e.g. the Autism Diagnostic Interview – Revised, this should also be administered by a trained professional and used in its entirety
The standardised assessments named above are the ones that I am familiar with but there are many more available. Standardised measures should be used as they ensure an objective, measurable assessment.
In an ideal world, all people in Scotland who wish to explore a diagnosis of autism should be able to access this without unnecessary delay. The screening and formal assessment process would be fair and equitable across Scotland. Scottish policy is beginning to incorporate the needs of those with autism and their carers. I hope this trend continues to a point where we get the diagnosis journey right.