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.
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