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The diagnosis of ASD isn't made on every person
suspected, and sometimes a definitive diagnosis may not be made
immediately - for both logistic and scientific reasons. While the
suggestion that a person may have ASD is often painful for all concerned,
it's far better to mention this as a possible diagnosis than to
offer superficial reassurance. Most families of individuals with
(and without) ASD will already have thought about this possibility,
and many report having tried for some time to obtain a referral
for more definitive testing.
How is ASD
diagnosed?
See Table
3 for the definitive assessment of a person with possible ASD.
This kind of comprehensive approach requires a variety of professionals
from different backgrounds who ideally have a good working relationship.
Some "teams" may see the patient in different places and
times and communicate from a distance; in this situation, one person
becomes responsible for integrating and interpreting the results
of others. School-aged children may have access to a few of the
above assessments through the education system, and input from healthcare
professionals is required to complete their evaluation. Some of
the information needed to sort out the differential may indeed only
be available to a general practitioner, such as the family circumstances
leading to reactive attachment disorder.
Individuals with
typical, severe autism may be "untestable" on standardized
tests and extensive assessment may not be necessary to establish
their diagnosis. Milder, less typical forms of ASD require more
careful evaluation, and young children may need several over time
in order to reach a confident diagnosis. This can be difficult for
parents looking for intervention, since funding agencies often withhold
approval for such programs if there's no clear diagnosis. It's often
tempting to offer a more confident diagnosis than the data support
in order to get kids into intervention programs, but this approach
leads to trouble later on.
One of the major
issues in ASD diagnosis is that "neurotypicals," i.e.
those of us without ASD, have a range of social communication abilities,
and we don't use our skills all the time. While social communication
can be precisely measured using research-standard instruments such
as the ADOS, in many clinical settings less formal measures (such
as the assessor's own ability to interact) are used. People "near
the edge of the spectrum" may look more or less functional
depending on the environment, so these informal measures are less
reliable.
What are
the treatment options?
As soon as possible (and often before the diagnosis is fully established),
individuals with ASD should begin to work on communication enhancement,
behaviour management and family support. The long-term goal of ASD
intervention is not to cure the person, but to achieve "optimal
functioning." All people with ASD should participate in group
learning settings to the extent that they can do so successfully;
for some, this may mean a severely restricted setting, while others
require only minimal support in order to be integrated with typical
peers. The main place that provides group learning opportunities
for children is the education system, and this is also the primary
location for intervention. Extensive intervention programs such
as Applied Behavioral Analysis (ABA) or Intensive Behavioral Intervention
(IBI) are also now provided in the family home; they're typically
funded through social service agencies, though this varies by jurisdiction.
While there's no specific medication indicated
for the treatment of ASD, most people with this diagnosis end up
on at least one chronic medication by adulthood; frequently they'll
be taking multiple meds, and often these are neuroleptics. The drugs
may be prescribed to treat specific target symptoms, for instance
sleep disturbances, inattention or impulsivity, obsession or other
anxieties, depression or seizures - or they may be for nonspecific
problems such as "emotional dysregulation." While medication
shouldn't be used as a substitute for good programming and support,
it can certainly enhance the effectiveness of interventions (and
help retain the support staff) when used appropriately.
For various reasons, individuals with ASD
are often treated with a range of alternative therapies. While few
of these are actually dangerous, almost none of them have been evaluated,
and some have a considerable cost to the family. The potential for
guilt trips on the parents' side is also of concern, since many
of these "therapies" are very difficult to administer
to a person with limited social communication abilities, mistrust
of novelty, and sensory hypersensitivities.
Where does
the GP fit in?
The primary care physician is involved in many aspects of the care
of individuals with ASD and their families. Screening and surveillance
are critical, particularly for very young children and adults. Also,
families often need support during the time of diagnosis, both to
deal with the emotional issues and to gain access to services. Once
someone has been diagnosed, they require ongoing care - both for
the ASD and for any additional illnesses.
GPs are often the only source of prescribing
assistance available and may have lots of experience with some of
the target symptoms mentioned. While individuals with ASD may be
more sensitive to side effects than others, they usually respond
well to the same medications if one "starts low and goes slow."
Another obstacle, however, is the resistance to change: the same
family that fights the initiation of a medication for months or
years may then become extremely reluctant to discontinue it. Support
from a family physician is helpful in this.
Adults with ASD face many challenges, not
the least of which is that specialist care for ASD is mostly found
through pediatricians or child psychiatrists. It's important to
have a "developmental" perspective into young adulthood;
those of us with young adult offspring know that adolescence doesn't
end at 18 - even for neurotypicals. Also, the long-term side effects
of medications such as neuroleptics begin to show up later in life.
Another difficulty that arises from the transition to adulthood
is the problem of aging caregivers and the fact that siblings start
to have families of their own. This is yet another "growth
opportunity" for family practice.
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