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Clinical Practice Points on the Diagnosis, Assessment and Management of ADHD in Children and Adolescents submission

ID: 
42
Personal Details
First Name: 
Julie
Last Name: 
Appleton
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November 25, 2011.

DRAFTER CLINICAL PRACTICE POINTS ON ADHD

Feedback from Mrs Julie Appleton

 

I write as a mother of  2 ADHD / LD adults now in their 30s who have survived the NSW education system, and are now setting up families of their own.  One has used medication since age 19, and one has not.

 

Thank you to the Expert Working Group who must have worked very hard to summarise the Draft Australian Guidelines for ADHD, approximately a 400 page document into essentially 17 pages. 

 

While absolutely necessary to give inquirers a quick look at ADHD issues, I trust that no professional would take a look at all 17 pages and assume that they were then expert in the subject.  Hopefully it will give just enough information to show the reader that they need to seek out more information on this complex neurobiological subject.  Fortunately in this modern day and age reliable information is readily available.

 

I applaud the conservative nature of the points listed; the mention of the need for ongoing monitoring; the need for more studies into certain points; and the maintaining of cautious restrictions placed on medications that may only be prescribed by specialists in this field. 

 

But there were a few points that are somewhat disappointing and even confusing, of course these may be revised when the consultation period has expired.

 

On reading the CPPs from an ‘outsiders’ point of view I would get the impression that ADHD is caused by bad parenting and lack of discipline.  I thought that this attitude had been  discarded more than 20 years ago when the early studies relating to genetic inheritability were made public, such as those of R M N Crosby.

 

No doubt poor parenting skills exacerbate ADHD behaviours, but they are not the prime cause of ADHD.  In deed it has been said that ADHD causes poor parenting skills – for some it is difficult to pass on the stability that has never been experienced.  While there are very few ‘perfect parents’ around the globe, by now there have been many studies including those by Professor David Hay and Flo Levy, that show very clearly the genetic influence and the inheritability of ADHD issues.

 

It would be good to clarify that ADHD is not just a synonym for a naughty child –  a serious condition that very often carries with it the risk of depression, and worse case scenario, suicide.  Suicide is the fear of most parents of ADHD children and young people.  Most parents, including me, have at some stage had their precious child turn to them and declare:  “I wish I was dead, I just can’t do this any more!”  And that threat or possibility arises before assessment and treatment take place.  Treatment, intervention, and understanding from family and community relieve the pressures felt by the ADHD child.  By creating comprehensive CPPs and Guidelines you have the opportunity to clarify and expand community understanding de-stigmatizing ADHD – we all need you to get this right!

 

I would have preferred that the FIRST questions in the assessment process include a family history of these and comorbid issues, then look at environmental influences. 

As it is the reader gets to Page 11 where the Specialist Assessment suggests looking at “family context including genogram” (or family tree).

 

From the CPPs I also gain the impression that GPs are the main source of management and assessment.  Perhaps it may be so in other states, even some rural and isolated GPs in NSW may be involved in this field, but there are not many who would be trained or experienced enough to take on this role.  There is certainly an opening for more involvement from GPs who seem to be actively avoiding a thorough knowledge of ADHD and related issues, preferring to pass the bewildered family on to specialist services.  This is not surprising considering the constant flow of misinformation that the community is fed from the media and other sources.

 

I was surprise that the CPPs create the notion that ADHD seems to disappear at adolescence.  As you well know ADHD issues do continue into adulthood, although they may change in manifestation and impact, gaining comorbid problems along the years.  But for many in deed for most ADHD is a whole of life condition, to a more or less degree.  Intervention and assistance gives the adult a chance at a more useful lifestyle.  Some of the members of the Expert Working Group would or should have experience with adults with ADHD and yet very little was mentioned of the whole of life span – perhaps leaving the inexperienced reader with the impression that ADHD dissolves at age 18!

 

Probably a minor oversight but page 13 point 4.2 that mentions ‘stimulant medication (methylphenidate)’.   What happened to dexamphetamine that has helped many adolescents and adults since the 1930s?

 

I don’t mean to be nitpicking, but helpful:  P15 last word ‘behavior’ should be behaviour.  P24 the period is missing from the end of paragraph 5.

 

There is another comment that I wish clarified: Page 21 – paragraph 2 – “These clinical practice points will provide interim advice until the evidence underpinning the draft ADHD guidelines can be updated and the ADHD guidelines revised.”

 

It was my understanding that the conflict surrounding Joseph Biederman’s financial reporting was resolved in July of this year.  The Biederman, Wilens, Spencer et al studies have not been questioned.  Who will undertake the revision of the draft Guidelines, and when will they be ratified?

 

What you have undertaken as a Working Group is of great value to the community who like it or not have inherited the challenge that ADHD can be.  The simpler it is for professionals in this and associated fields to ‘grab’ accurate information, the better.  I do understand and appreciate the difficulties that such an onerous task becomes when your daily life must also continue.  Thank you all.

 

 

 

 

 

Page reviewed: 14 September, 2012