Reach Out April 2019

Personal Information Stories
For young children, there are a group of interventions called
naturalistic behavioural interventions. These involve shared
control between the therapist and parent. They often take place
within the home environment and are generally more flexible than
other more structured approaches.
TAND at school
Choosing the right school and securing the required supports is a
challenge many families with a child with TSC face. Many families
choose a mainstream school for their child who may have specific
learning difficulties or delays, but report significant struggles to
secure and keep additional classroom supports.
When choosing a school, one TSC family reported that they
chose the school based on the ‘feeling’ of the school community
and how collaborative they were with parents. A school that
has access to allied health professionals, such as occupational
therapists, to work in the classroom can also be a big benefit for
some children with TSC. It can also be helpful to advocate for your
child to be taught by more experienced teachers and to build a
trusting relationship with these teachers.
In the classroom, a student with TSC may struggle because
of their uneven TAND profile. Teachers may believe a student is
being lazy because they are able to do complex work in one subject
but not in another. We know from formal research into TAND
One of the hardest parts of
TAND is finding the professionals who
can provide the required assessments
and interventions.
that people with TSC can have very specific difficulties, such as
with mathematics, written expression or working memory. This is
one reason that a detailed assessment, that builds a profile of both
strengths and weaknesses, can be so valuable.
Some adults with TSC report that they benefited from
additional help to develop skills that did not come as easily to them
as their peers. Even into adulthood, it is not too late to work on an
area of weakness.
School counsellors are often the gateway to cognitive and
academic assessment. However, many school counsellors and
teachers have limited understanding of TSC and TAND so may not
refer appropriately.
The Tuberous Sclerosis Alliance (USA) has a package of
information for teachers that can help to explain TSC. TSA has
identified a detailed resource for Australian educators as a project
we would like to develop and this project will be one of our
fundraising goals for 2019.
Lifelong mental health support
The challenges of TAND start right from the moment of diagnosis
and this life-changing event can be traumatic. TSA is working
with the nib foundation, TSC families and health professionals to
reduce this trauma and encourage parents and people with TSC to
seek mental health support through our, soon-to-be-developed,
‘Parachute Pack’.
Your GP is the best place to start and can work with you
to develop and monitor a mental health care plan. Significant
research supports the use of talk therapies with a skilled
psychologist. Talk therapy is also possible for a person with
intellectual disability or communication challenges, but will
require a professional with specific skills.
For children, there are public health services, including mental
health supports, that your GP or paediatrician can refer you to. For
example, in NSW, we have the Child and Adolescent Mental Health
Service (CAMHS).
Medication can be useful for severe anxiety and depression,
specifically the class of medications called selective serotonin
reuptake inhibitors.
Finding and funding for the right professionals
One of the hardest parts of TAND is finding the professionals
who can provide the required assessments and interventions.
Neuropsychologists and neuropsychiatrists can be particularly
useful for assessments and appropriate interventions for
individuals with complex medical conditions.
Talking to other people who experience similar difficulties,
such as others with TSC, can help to identify the most appropriate
professionals to help. In the future, expanding the TSC
Professionals Network, maintained by TSA, could be a way to
identify these professionals.
One TSC family found that they needed to use private services
when the public early intervention options proved to be unsuitable.
“When our son was first diagnosed with TSC, we were
referred to our local area health service for therapy. While physical
therapy was great, we got a different student speech therapist each
appointment and they just weren’t responsive to our son’s needs.
We have had to pay for private therapy, some of which was funded
by Medicare and our private health fund. Since then we have used
a package of funds from the federal government and recently
transitioned onto an National Disability Insurance Scheme (NDIS)
package that covers our son’s intensive therapy,” says Jeremy.
The NDIS is commonly used to access supports for TAND,
but this is usually not an easy or straightforward process. Many
TSC families have found talking to others living with TSC and
related conditions can help them navigate the eligibility and
planning processes. The TSC Information Service can help to
connect you with others in the TSC community and with advocacy
organisations in your area.
The future for TAND
The global TSC community has consistently ranked TAND as
collectively the aspect of TSC that impacts their lives the most.
TSC organisations, health professionals and research funding
bodies are responding to this. For example, The King Baudouin
Foundation in Belgium has set aside 600,000 euros for research
into TAND. The largest TSC patient organisation, the Tuberous
Sclerosis Alliance (USA), has commenced a TAND initiative
including patient information, health professional education and
research projects.
The TAND checklist has been rolled out in various clinical
settings since it was first published in 2015. TAND experts are
reviewing the guidelines for TAND screening and responding
to calls for the checklist to be self-administered. They are also
considering development of a practical TAND toolkit to help
people with TSC identify the strategies and interventions that can
help them live with their unique TAND challenges.
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