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Hello community

StepmomClare

Hi there,

My name is Clare and I moved in with my partner and his 23 year old aspergers son (R) two years ago.  His son was at university until July 2013 and things were pretty smooth up until this time, with him only being home during the holidays and spending most of thosse in his room.

I have no knowledge of aspergers, other than what my partner tells me which is usually tagged with a comment along the lines of 'he self-diagnosed and knew he was different'.  R's parents did not get an official diagnosis as it never affected R's education and they muddled along.  When R's parents separated his mother bought a house without a room for him and I hadn't realised that she found him so difficult to live with that this was her way of managing the situation.

I am struggling to manage on a day to day basis and would welcome advice and support.  R doesn't work, spends all day in his bedroom on his bed, he rarely showers or washes his hair, rarely washes his clothes and his bedroom wreeks of b/o.  Consequently I shut his bedroom door when he is not in as the smell is overpowering and today this has caused the most terrible row.  My partner feels I am unsupportive, I feel my partner does nothing to change the situation by way of giving routines to his son but he tells me he has spent a lifetime trying to do this and R just cannot see the point in washing etc.  

I am flummoxed and lost, we are arguing or barely talking and inbetween all of this are my two teenage children who live in the same house as us and I fear they will not want to be here too much longer if things carry on.

I really would welcome some advice from anyone out there in a similar situation.

Thanks for listening, already feeling better!

  • Personal hygiene is affected because of issues like co-morbid depression and also just remembering and needing visual prompts.  When someone with AS has no social life and is bored and reclusive they don't have the impetus to maintain hygiene.

  • It may help if you provide some structure. You can get day plans from some websites that set out what to do, and try to persuade him to follow them.

    That would create some routine in his life, for example reminding him to wash properly in the morning.

    What I do have by me is a copy of Jamieson & Jamieson "Managing Asperger Syndrome at College and University: a resource for students, tutors and support services" (SEN Post 16 series David Fulton Publishers 2004). When this first came out it was a godsend to university staff, but in fact proved too simplistic, as universities found more and more variants of autism.

    What it does do is provide pointers towards issues that can arise when students leave home and live on a university campus (I know this is not your situation but it may help).

    They state: "It is not unusual for students with Asperger syndrome to have significant problems with personal hygiene when they start living away from home. At home they have had an unchanging routine where there were prescribed tiomes for bathing, showering, hair washing and cleaning teeth. Without this structure and routine, personal hygiene can be neglected".

    I bet a few parents will be surprised at the definition of home life with a teenager, and you don't have to be a student with aspergers not to wash properly - many a lecturer can testify to encounters in a stuffy room with a very smelly student who appears to be living on the streets (giving rise to a phone call to student services to find out if the student has difficulties, if this cannot be elicited tactfully in conversation with the student).

    But they do raise some very valid issues. Sharing facilities even at home can make people with asperger's reluctant to use the facilities. He may feel he hasn't got privacy.

    Soaps, shampoos, toothpaste may smell differently and taste differently, and have an unpleasant feel - is he allowed his own soap or does he have to use what's there?

    People with asperger's may acquire strange ideas in isolation about their private parts, and may not want to wash themselves. Or may be unduly sensitive there to soaps.

    As you are a newcomer into the household, he may be disturbed about sharing facilities you are now using.

  • The fact he is not officially diagnosed does not mean that autism or asperger's does not apply.

    Lack of personal care can be an issue. For someone who may not be able to socialise effectively and is therefore isolated, social expectations of hygiene may not be uppermost. But also there are issues with executive function that might prevent him recognising the need.

    I was hoping to find something about it on the NAS webpages but it is not that easy. There is a page if you start with "Living with autism" top of home page, second item. Then click on "Understanding Behaviour" then scroll down to "Behaviour- Common Questions Answered" where you will find "My adult son doesn't like to wash himself, which is beginning to impact on social situations he is in".

    This will give a number of reasons why this happens. Not ideal, but quite common with autism/aspergers.

    There are books around, usually published by Jessica Kingsley Publishers, that give a better explanation than I can find on the NAS website.

    Be more understanding. Its not that easy to resolve.