Answers from Wendy Lawson and David N. Andrews, APANA's
Patron and Chair, appear first. They are followed by
the same questions without answers for you to download
and fill in if you/the autistic individual in your life
have experiences of non-autism-appropriate (especially
neuroleptic) prescribed drugs which you would like to
share with APANA.
The questions are intended to help convey a clear picture
of those experiences. If in doubt go with what suits
you best, write as much as you feel like and skip any
questions that you dont feel like answering.
1.Did you have another diagnosis before? - if so, what
diagnosis or diagnoses did you have? And how old were
you when given that diagnosis or diagnoses? WL: Yes,
I did. I was thought to be intellectually disabled and
at 17 was diagnosed with Schizophrenia. DNA: There was
a query-dx of schizophrenia. It's easier and cheaper
to treat, so they tend to save money by wrong diagnosis!
2. What sorts of treatments have you been given? WL:
By way of drug treatment I was firstly given Largactil
and a variety of anti-depressants. I don't really remember
their names. Later I was given Modecote injections every
month. DNA: Chlorpromazine and Stelazine... adult dosage
for schizophrenia maintenance, without an accurate dx
3. When did you receive the various treatments - at
what ages? And were you in hospital at the time? In
residential care? Or at your own or your natal home?
WL: At 17 I was given Largactil and anti-depressants,
I was in an institution for the mentally unwell. Around
20-30 I was given modecote and different antidepressants
(Melleril?)I spent the day in a day centre, went home
at night. I came off meds each time I was pregnant.
I went onto Stellazine at forty, came off it finally
at 46, then took zoloft. I return to zoloft sometimes.
DNA: I was at home, and I would be 13 and 15 at the
4. If you were prescribed medications, were you told
what they were for? were your family told what they
were for? WL: No I don't remember being told exactly
what they were for (my nerves). No, nor I nor my family
were told about side effects. DNA: None of us were told!
had we been, my father would have questioned the schizophrenia
5. Were either you or your family told of possible
side effects? DNA: No, although I have a text that shows
clearly that side-effects were well documented at the
6. Were you given a choice about receiving medications?
WL: No I was not given a choice about recieving medication.
No... no info given, no dx mentioned, and the chlorpromazine
(largactil) was given ostensibly to "help with
concentration", despite the fact that it is known
to fuck your concentration to bits!
7. In your view, did any prescribed medication make
you more sociable? If so, what medication? WL: No, none
of the meds made me more sociable...actually, they did
the opposite. DNA: not at all!!! my mother describes
me during that time as being like "a zombie"
8. In your view, did any prescribed medication make
you more communicative? If so, what medication? WL:
No, they did not make me more communicative either...just
more sleepy. DNA: No... see above...
9. In your view, did any prescribed medication make
you more creative or imaginative? If so, what medication?
WL:No, they did not. DNA: not at all!! desroyed what
creativity I had... stopped playing guitar....
10. In your view, did any prescribed medication improve
your cognitive abilities? If so, what medication? WL:No
they did not.
11. Would you describe the effects of any prescribed
medication as helpful? - for you? Or for those around
you? WL:Maybe....they enabled me to further rertreat
from a confusing and scary world....sleeping lots seemed
like a good idea at the time.
12. Did you experience any side-effects? If so, what?
WL:Yes, constipation, weight gain, involuntary movements,
the shakes, dry mouth, dizziness and tiredness, very
difficult to concentrate or think, reactions to sun
13. Are you still suffering from side-effects? If so,
after how many years? WL:Yes, I still have some involuntary
movements and find concentrating difficult. DNA: with
stelazine, serious bone-breaking extrapyramidal effects
like having tetanus ALL OVER MY BODY!!!
14. Was the prescriber interested in your views? WL:I
don't know...nothing was ever said or discussed about
it. DNA: Was he fuck!!!
15. If you raised concerns about any medication did
those result in a change in your medication regime WL:I
never knew that I could raise concerns....it didn't
occur to me and no-one ever asked. DNA: I had no idea
what was happening! · decrease, · increase,
· addition of another medication or ·
replacement with another medication?
. If others raised concerns about any medication did
those result in a change in your medication regime?
If so, was that in the direction of DNA: My mum had
them take me off the stelazine.... · decrease,
· increase, · addition of another medication
or · replacement with another medication?
17. Approximately how often did you experience changes
in your medication regime? What proportion of those
would you say came about in response to your wishes?
18. Were any prescribed psychotropic medication introduced
in gradual steps? If so were the steps separated by
days, weeks, or months? DNA: not stepped at all....
straight in with adult doses!
19. If you have stopped taking a medication
under medical supervision was this withdrawal carried
out through stepped reduction over days, weeks or months?
WL:I don't really know how often....changes occurred,
but I don't remember them. I did start off on Stellazine
gradually, build up to a higher dose and then because
of shaking and restlessness the dose was reduced. I
have withdrawn my medication by myself. I thought that
the doctors might be cross and might discourage me.