Reach Out April 2019

Information
Issues in
TAND
Clare Stuart
TAND stands for ‘tuberous sclerosis associated
neuropsychiatric disorders’ and includes the challenges
that people with tuberous sclerosis complex (TSC) have with
behaviour, mental health, learning, autism, brain skills, attention
and intellectual disabilities.
In 2018, Tuberous Sclerosis Australia (TSA) held
‘Understanding TAND’ events in three Australian cities with
international expert in TAND, Professor Petrus de Vries, from the
University of Cape Town South Africa.
As a part of these events, we explored three questions:
• Which aspects of TAND have the biggest impact on the lives
of people with TSC?
• What resources, such as professionals, organisations and
treatments, are helpful?
• What are the biggest gaps where we can help the Australian
TSC community with the challenges of TAND?
In this article, we summarise some of the issues that emerged
in these discussions with the diverse group of participants at
these events along with Australian professionals. We also held a
discussion on TAND at our 2017 Melbourne TSC Information Day.
You can read an overview of TAND, including downloading the
TAND checklist screening tool, on our TAND information page at:
www.tsa.org.au/information/tand
One of the challenges
people with TSC experience is
seeking a diagnosis for various
aspects of TAND
The uniqueness of TAND
The one common theme of discussions at our events was that each
person with TSC is different. Research into TAND has also shown
that each person with TSC has a unique profile of aspects of TAND
that affect them. Another challenge people with TSC find is the
way an individual’s TAND profile changes throughout their life.
Using the TAND checklist and regular assessments, particularly at
key developmental and life stages, can help to stay on top of issues.
To label or not to label?
One of the challenges people with TSC experience is seeking a
diagnosis for various aspects of TAND. A diagnosis, such as autism
or attention deficit and hyperactivity disorder (ADHD), may be
helpful to understand the person with TSC and also to access
therapies and funding for these therapies.
Sometimes TAND challenges will be overshadowed by the
diagnosis of TSC, and professionals will consider the symptoms
to be just part of TSC and not a separate diagnosis. Sometimes
professionals will be particularly reluctant to diagnose because they
know labels can be difficult to remove once they are given. If the child
has a developmental delay, the professional may be unsure whether
the challenges, for example with communication, are related to the
developmental delay or if they will continue separately from the delay.
But we know that people with TSC are at significant risk of
various aspects of TAND, including autism, attention deficit
hyperactivity disorder (ADHD) and learning disabilities. This
means that they are likely to benefit from early intervention and
often a diagnosis is required to access appropriate interventions.
One Australian expert suggested that red flags for autism can be
useful to trigger a detailed assessment for autism. Child Health
Queensland has a useful list at:
www.childrens.health.qld.gov.au/wp-content/uploads/PDF/
red-flags-a3.pdf
Attention and impulse control challenges
and interventions
Many people with TSC experience difficulties with sustaining
attention, hyperactivity and controlling impulses. Many people
with TSC find movement breaks are a relatively simple strategy
that can help hugely in the classroom or at work.
Professionals recommend that, when these challenges meet the
criteria for ADHD, medication can be a useful tool in combination
with other interventions and strategies.
A paediatrician is the best starting point for assessment of ADHD
in children. In adults, this process will usually start with a psychiatrist.
Understanding challenging behaviours
All groups spoke about challenging behaviours, including
aggression, as a major impact of TAND on the person with
TSC and their family. Discussions identified both anxiety and
difficulties with impulse control as a possible underlying cause of
these behaviours.
To help with behaviours that challenge the person with TSC
or those around them, many ideas were shared at our events. One
place to start is to try to understand the meaning or function of the
behaviour. One tool to help with this is called the ABC approach,
which stands for:
• Antecedents (what happened before the behaviour?)
• Behaviour (what is the actual behaviour?)
• Consequences (what happens afterward?)
There is more information about this approach at:
www.synapse.org.au/information-services/abc-approach-tounderstanding-behaviour
The developmental behaviour checklist can be a useful tool for
professionals to assist with diagnosis and for monitoring interventions.
20
Reach
Out
APRIL 2019 ISSUE 109