Hello
Posted: Fri Apr 16, 2010 5:49 am
Hello everyone,
Am new to the forum,though not so new to toileting 'problems'.
Am twenty six,severely autistic and have had lifelong 'sensory toileting problems' [mostly urine] which have never officially been given a name,as most have seen it as a side effect to being autistic and believe only classic incontinence is genuine.
The actual difficulties are to do with feel-am unable to feel the need to go toilet,until its at bursting point,and often do not make it to toilet on time.
also do not feel the pressure of weeing-as to be able to make it go properly [if that makes any sense?] and do not know when have finished-which can get messy.
Having never known any different,it hasnt been seen as an impairment to self and what other people think of it does not affect self, but for the past few years have been really fed up with having to change so often-and clothes shrinking/ruining quickly because of the washing.
mum/dad took it as an attention seeking burden on them,and have been in residential care since twenty,where have been given every nasty possible excuse to not even look into getting pull ups.
SS learning disability residential services refused to allow any nappies [uk version of diapers] or even pull up pads [the lighter version of nappies]-their excuses given for it were-the nappies woud become a routine and woud avoid using the toilet,would be lazy and just use them as a toilet,the toileting problems dont exist,its just task avoidance,its attention seeking behaviors etc.
they always refused assessment by the incon nurse,even though the support staff are not doctors to be able to judge someones need.
Was having to wear very difficult to use huge wads of toilet roll as pads which only took some of the damage.
In the residential centre am in now,they recognised the sensory problems in toileting at last, but its not what it shoud be,they only allow pull up pads [go between Boots' own brand ones,sainsburys own brand ones,and tenna lady discreet extra].
They think any stronger will encourage not to use toilet.
the pads are to thin-will still often soak through trousers,so woud like to get the nappy type,and through the NHS because am told they use up a lot of money,and am not able to get the care component of DLA [disability living allowance] whilst in residential care -which woud have paid for them.
Does anyone have ideas on how to get this taken seriously?
is there a name for the problems have mentioned? as think a name woud be a good start into being allowed assessment.
dont know whether this is connected or not-but am not able to feel most types of pain [just very deep pains such as migraines that can feel]and a wonky sense of pain is seen as a side effect to autism to,so does this sound like something to do with nerves?
Sorry if have wrote to much and thanks for getting this far!
Am new to the forum,though not so new to toileting 'problems'.
Am twenty six,severely autistic and have had lifelong 'sensory toileting problems' [mostly urine] which have never officially been given a name,as most have seen it as a side effect to being autistic and believe only classic incontinence is genuine.
The actual difficulties are to do with feel-am unable to feel the need to go toilet,until its at bursting point,and often do not make it to toilet on time.
also do not feel the pressure of weeing-as to be able to make it go properly [if that makes any sense?] and do not know when have finished-which can get messy.
Having never known any different,it hasnt been seen as an impairment to self and what other people think of it does not affect self, but for the past few years have been really fed up with having to change so often-and clothes shrinking/ruining quickly because of the washing.
mum/dad took it as an attention seeking burden on them,and have been in residential care since twenty,where have been given every nasty possible excuse to not even look into getting pull ups.
SS learning disability residential services refused to allow any nappies [uk version of diapers] or even pull up pads [the lighter version of nappies]-their excuses given for it were-the nappies woud become a routine and woud avoid using the toilet,would be lazy and just use them as a toilet,the toileting problems dont exist,its just task avoidance,its attention seeking behaviors etc.
they always refused assessment by the incon nurse,even though the support staff are not doctors to be able to judge someones need.
Was having to wear very difficult to use huge wads of toilet roll as pads which only took some of the damage.
In the residential centre am in now,they recognised the sensory problems in toileting at last, but its not what it shoud be,they only allow pull up pads [go between Boots' own brand ones,sainsburys own brand ones,and tenna lady discreet extra].
They think any stronger will encourage not to use toilet.
the pads are to thin-will still often soak through trousers,so woud like to get the nappy type,and through the NHS because am told they use up a lot of money,and am not able to get the care component of DLA [disability living allowance] whilst in residential care -which woud have paid for them.
Does anyone have ideas on how to get this taken seriously?
is there a name for the problems have mentioned? as think a name woud be a good start into being allowed assessment.
dont know whether this is connected or not-but am not able to feel most types of pain [just very deep pains such as migraines that can feel]and a wonky sense of pain is seen as a side effect to autism to,so does this sound like something to do with nerves?
Sorry if have wrote to much and thanks for getting this far!