 A message to young people, adults and their families living with autistic conditions:
Parents and families of already diagnosed older teens enter a
different world as their child approaches adulthood. It helps
to have a network of contacts experienced with the issues that
can arise. As the number of children receiving diagnoses
increases, so services are increasing.
For young adult or older adults just seeking or receiving a
diagnosis for the first time, the process can feel very isolating,
for them and for their families. You're not alone. The number of
young adults and adults receiving diagnoses is steadily increasing.
There are many other families, teens and adults experiencing the
same or similar things.
It is not unusual for families receiving a diagnosis for their
child to discover that other family members (other children,
partner, others in the wider family) are also affected or have
some of the traits (or even just show the traits when under stress).
This is the case for a number of members of Umbrella, so you will
meet others in a similar position at Umbrella events. Sometimes a
diagnosis is needed and sought. More often people to find it helpful
make sense of their experiences in light of the autistic spectrum.
Any diagnosis is a journey into a foreign land and, in Cambridgeshire,
the autism world is far from a desert, at least in terms of
opportunities for families making contact with one another! Making
contact with others with similar experiences can be very helpful
and reduce isolation. Umbrella provides opportunities for you
to do that.
At present, the younger the child the more services are available.
There is still a lag in services and opportunities for young adults
and adults. The services being piloted now are trailblazers for the
services of the future. Umbrella is playing an active role in setting
up community based services and activities. We can expect, in years
to come, the autism-friendly opportunities and services to increase.
At this point there are few autism-specific services for older teens
and adults in the Cambridge area. At this point they include a diagnostic
service, a social group, and a full time education programme for people
(aged 16-75 plus) with Asperger Syndrome or similar conditions.
These last two have resulted from Umbrella members' efforts.
Contacts are given below.
Social Services, Adult Learning Disability Services and the Mental Health Services
The Adult Learning Disabilities Teams under the Learning Disability
Partnership covering Cambridgeshire generally require the person also
have an IQ of below 70 to be eligible for their service. However,
we do hear of exceptions to this when there is a really incapacitating
level of vulnerability or a high level of care required. This is not
the case in all areas of the UK and there are movements to try to get
social care available also for people in need with Asperger Syndrome
and High Functioning Autism in Cambridgeshire.
The Adult Mental Health Teams do not (nor the Young People's
Psychiatric Service, which is part of the Adult Service) offer any
service specifically geared to people on the autistic spectrum, as
these diagnoses are not regarded as "mental illnesses" in themselves.
Since specific diagnosed mental health problems are more likely to
arise at some point when a person has, e.g., Asperger Syndrome,
people with these conditions do also get seen by the Mental Health
Service when there is also a mental health problem. Our members
report that, in general, the mental health services offered are not
adapted specifically to the underlying autistic spectrum condition,
however. The service is usually specific to the symptoms of mental illness.
It is important to note that mental health practitioners are not entirely
united in their understanding and response to autistic spectrum conditions,
particularly Asperger Syndrome and similar diagnoses in more able people.
Our members report occasionally coming into contact with consultants who
appear not to accept Asperger Syndrome or similar high functioning
autistic conditions exist or require any response other than the standard
mental health treatments they provide. Where this is encountered and is
proving unhelpful, our members have found it important to simply seek
a more informed consultant or other professional to work with.
Supported Independent Living
There are two privately run very small autism-specific residential
care facilities in Cambridgeshire (Elm House in St Neots and
Juniper House in Stretham), but access for local people depends
on getting the necessary funding agreed by local services as
well as availability of spaces.
We have members who are very experienced in trying to put together
individualised supported living packages for their own adult
family members. It is very challenging and if you are trying to
do this it is well worth making contact with Umbrella.
Having contact with others can be very helpful.
A group of Umbrella parents of adults have worked steadily over
a few years at trying to get an Asperger-specific supported
living facility set up in Cambridge. For a variety of reasons
families have found settings for the learning disabled or the
mentally ill as unsuitable. Funding is now given directly to
disabled people and could be used to fund an Asperger-specific
supported living facility. Although it seems wise and feasible
in practice, we are continuing to struggle to get an appropriate
range of partners committed to translating the idea into action.
We welcome support for this from autism service providers,
workers and interested parents. Meanwhile, we will continue to
look for committed partners and establishment of a facility and
welcome expressions of interest.
Contacts especially relevant to older teens and adults
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