This article is equally applicable to both boys and girls. In the course of many years of clinical
experience I have learned that boys can be just as good as girls at ‘masking’
their difficulties (particularly those who have the Pathological Demand
Avoidance profile).
Way back in the early 2000’s I remember when the National
Autism Plan for Children (NAPC) guidelines were developed to assist clinicians
in the assessment and diagnosis of children with Autism. These guidelines were followed some years
later by the NICE (National Institute of Care and Clinical Excellence)
guidelines.
The guidelines recommend that any assessment should start
within three months’ of a referral being made. However, this is usually not the case. In 2015 the National Autistic Society carried out a survey of parents
who had been through the diagnostic process in the UK. This survey found that the majority of
parents were aware that their child had a difficulty from a very early
age. The average wait time between
parents first noticing a problem and getting a final diagnosis, was reported to
be around three and a half years!
The NICE guidelines also recommend that every child who
receives a diagnosis should be given a personalised plan, an allocated key
worker and ‘the opportunity to take part in age-appropriate psychosocial
interventions’.
This clearly is not the case for the majority of young
people. Parents often report that they have tried to access support
for their children from their local Child and Adolescent Mental Health Services
(CAMHS) without success. Some state that
they have been told that their child is not presenting with ‘serious’ enough
difficulties and that teams only have capacity to see children with very
significant mental health issues. The
trouble is, that without any post-diagnostic support, children and young people
can go on to develop more serious problems.
Also, what a lot of people fail to understand is that there
is no ‘quick fix’. Children with Autism
and PDA are not going to be ‘fixed’ by a few sessions of support around
managing anxiety, or anger. They are
likely to need specialist input from clinicians who really ‘get’ Autism and
have the expertise to modify standard CBT (Cognitive Behavioural Therapy) and
other approaches. Also, when
working with children with Autism, it often takes a significant amount of time
to build a therapeutic relationship.
In addition, with Autism and PDA, the issues that families
and young people do have, tend to wax and wane. There may be periods where everything is going
well, followed by a ‘crash’ when problems become more significant and
troubling. This is often at times of
transition, when school work or friendship issues become more complex.
Having worked for many years in NHS CAMHS teams, I do fully
appreciate and am sympathetic towards the difficulties they face. I know how stretched they are and I am fully
aware of the number of children (with and without Autism) who have very serious
mental health difficulties. It is a
constant challenge to juggle available resources and time. Prioritising who to see is a nightmare.
How can this be done fairly? What may not appear to be a ‘serious’ mental
health condition or a ‘serious’ level of challenging behaviour can change in a
moment, and can quickly become a crisis, leaving parents and young people,
struggling to cope.
Also, another argument for the benefit of providing
intervention and support before crisis point is reached, is the huge cost (both
financial and emotional) of managing a young person in inpatient services. There is a national shortage of adolescent
beds throughout the country and young people often have to be accommodated in
units many miles from home. By this
point, things may have got so bad for them that they are self-harming,
presenting with extremely challenging behaviour or are even suicidal.
Once in hospital, there is also no guarantee that they will
be lucky enough to be treated by staff who understand Autism or who have the
expertise to provide the modified intervention approaches needed by young
people on the Autistic Spectrum. On top
of this, once discharged from hospital, it can be very difficult to arrange
follow-up support.
So when professionals (as cited in the article by Tracy Elliot
entitled ‘Why timely diagnosis of autism is important’ – cerebra.org.uk ) state that
reducing waiting times for Autism diagnosis may not be a ‘priority’ for the
NHS, this seems to be extremely short sighted. Surely ensuring that children and young people are assessed and
diagnosed in a timely manner would ultimately save the NHS huge amounts of
money? In addition, it would also save
young people and their families from enormous emotional upset and confusion. The sooner that families know what they are
dealing with, the more likely they are to use the right strategies and the
young people themselves will know that they are not ‘odd’ or ‘weird’.
PLEASE NOTE - We offer a free initial screening service for children and adults with suspected ASD or ASD/PDA.
Please just email: office@help4psychology.co.uk for full details of the initial free screening, and we can also provide you details of our comprehensive formal assessment service.
_______________________________________
PLEASE NOTE - We offer a free initial screening service for children and adults with suspected ASD or ASD/PDA.
Please just email: office@help4psychology.co.uk for full details of the initial free screening, and we can also provide you details of our comprehensive formal assessment service.
_______________________________________
Finally, I cover missed Autism and PDA diagnoses in my book titled "A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support", which for anyone interested in this area can be viewed at Amazon.
Thanks for this post. Having two children diagnosed with ASD but with undiagnosed PDA, who both reject their ASD diagnoses, it would be good to have a post on anosognosia because it causes very, very significant problems when the child does not accept they are autistic. https://planetautismblog.wordpress.com/2016/09/05/anosognosia-and-autism-a-real-concern/
ReplyDeleteSo whilst you say "young people themselves will know that they are not ‘odd’ or ‘weird’." it can be the diagnosis itself that they see as odd or weird and which causes them to reject it. Along with the denial side of PDA and living a persona which is not autistic, causing rejection of course.
Loved this, well done, it really is as you write it.
ReplyDeleteThanks for shearing about this I thinks its very hopeful post and very important post for us. Thanks for your great and helpful presentation I like your good service.I always appreciate your post.
ReplyDeleteanxiety disorder icd 10
I'm struggling to get a diagnose I've been fighting for years, my son was assessed when he was 7 but in the assessments he was highly aggressive they said because he had a bit of eye contact and showed some imagination he didn't have it, years on I'm stil fighting, he also attending cahms they weren't very good he also said he done we bit of eye contact and showed emphany towards me so agreed he didn't have it. When I said this to my son's head master (who has a asd son) he said my son has never made eye contact feels there wrong. I have now pulled social workers in because I know he has asd/adhd as soon as he walks through my door it's like he releases everything from that day outside. It's getting to the point I don't know how much more I can fight.
ReplyDelete