Supporting our son

Hello 

We wonder if anyone can help .

We are really proud of our lovely son , who is 26 and really enjoys doing BTEC art and design at his local college , where his tutors are very supportive . He has multiple issues , though , which he really struggles with at home and outside college . We are definitely making progress - he even let me use the "a" word yesterday ! ( one of his issues is that he struggles with accepting a diagnosis of aspergers ) . He communicates much better with me now ( I am Leaf's mum) and told me yesterday that he feels angry most of the time , & I said that must be so horrible! He has really great NAS workers who take him out & he enjoys playing squash with Sean . However , our main worry is that he just can't cope in his flat at home and simultaneously with college too . Leafy's flat is really chaotic & he struggles with self care and keepi his flat clean & tidy .Last year , his social worker had to move him into an adjacent flat to have it deep cleaned , & by Christmas , it was very dirty again . Leaf just seems to get overwhelmed very quickly & feels very embarrassed when we suggest he might find a cleaner useful . His social worker is considering suggesting supported living , which we( Leafy 's family ) think might be a good idea . But Leaf feels very secure in his flat & it is very important to him . 

Any suggestions at all about how we can move forward whilst helping Leaf feel respected & for him not to feel that he has failed in some way would be really helpful .

many thanks 

Sky ( Bristol)

Parents
  • Hi Onceina

    I have had problems with keeping things tidy, cleaning up and 'organised' all my life.

    I am the neatest person when it comes to doing intricate work. I can take a pride in cleaning but it does not last long.  It only takes a moment for me to wonder where something is and that is it. 

    This is a law of physics.  Something to do with entropy.  Or the second law of thermodynamics (or is it the first or third?)  Summarised by my ex wife it is 'everything ends up on the floor'.  Unfortunately there is not a stable state of things that is 'tidy'.  The world goes from an 'improbable' state to a 'probable' state, from 'tidy' to untidy.  And when the concentration goes elsewhere, putting the large amount of energy into reversing this is very exhausting.  Especially to someone who is autistic. 

    There are too many distractions when trying to tidy up.  I come across things that are so interesting, some book or magazine, and it finds a new life.  And before long the time allocated for tidying has gone.

    Some things you might try:  allocating a set time for tidying each day.  Half hour a day might make a lot of difference.  And perhaps with some music or a radio programme (I am a radio four fan myself), your son might be able to do the tidying up while engrossed in listening through his headphones.

    Being resistant to having a cleaner is part of the 'resistance to change' and also part of the nature in wanting to do thinsg his way and making his own decisions.   The greatest problem with someone else coming in is that your son is attached to things, he has not just left rubbish on the floor and on surfaces and chairs, but things he thinks will be useful.  So he must be included in any 'cleaning' that is done as it could cause great trauma him finding that things had been disposed of without his permission.

    You might buy some plastic containers (large ones) so he can sort things into them that he finds useful and make it easier for him to clean up what even he would concede as 'genuine' rubbish.  There has to be some sort of compromise over the number of containers he has, but he might like to organise his things into separate themed boxes for him to sort out properly later, at least that may make it easier to clean the floor or other surfaces. And once in the containers, they must find a proper home in somewhere readily accessible.  Even if the storage place for these containers is just a shelf system behind a curtain, it will be a lot tidier.  But things must always be accessible, not being readily accessible will set the untidiness off again.

    I hate living in a flat.  There is never enough room, not enough room for my collections of things, not enough space to put cupboards and drawers to keep things.  Flats were certainly not devised with autistic people in mind.

    I think you have to accept that your son is not likely to change.  This is due to his makeup.  Things might get better for a few weeks, especially if the flat is tidied he might try to keep it that way for a while.  But long term it will get worse.  His flat will quickly become too small for things he accumulates, he will get so engrossed in other activities and forget to put things away.  This is not deliberate or laziness, it is the way he is.  And no amount of nagging will change him.

    I drove my first wife mad with the mess I used to make. My second wife is a bit more understanding, but that is mainly because she is not so concerned herself about putting things away.

    Your son may find some satisfaction in cleaning the fridge, cooker and bathroom.  I know I can spend ages getting them clean, removing every bit of dirt.  But these are not jobs that should be 'rushed'.   If he can spend a couple of hours cleaning the fridge for example, and then make sure everything is in sealed containers, it is not overstocked, if he is like me he will find that easier to keep clean.  Buying thngs as he needs them rather than on the offchance might be an idea.  Your son might like a regular 'timetabe' of food so every Monday he has the same menu, every Tuesday has the same Tuesday menu, etc.  Doing food shopping twice a week will help stop accumulating things from a weekly shop that are forgotten about and not used. 

    Only having a few bits of crockery and cutlery might stop using every piece and then not washing it up.  Just a couple of plates, cups and knives and forks will certainly be a lot less overwhelming than having a dozen plates and cups to wash up.

    I can understand his reluctance to be 'labelled' as autistic or aspergers.  I am now at ease with this myself, I accept it and being autistic makes me who I am.  I am sure as he gets used to saying the words he will get used to them.  I prefer the term 'autistic' myself, I am autistic.  And if people have a problem with that, it is their problem.  It is a part of the diversity of the human animal and nothing to be ashamed of.

Reply
  • Hi Onceina

    I have had problems with keeping things tidy, cleaning up and 'organised' all my life.

    I am the neatest person when it comes to doing intricate work. I can take a pride in cleaning but it does not last long.  It only takes a moment for me to wonder where something is and that is it. 

    This is a law of physics.  Something to do with entropy.  Or the second law of thermodynamics (or is it the first or third?)  Summarised by my ex wife it is 'everything ends up on the floor'.  Unfortunately there is not a stable state of things that is 'tidy'.  The world goes from an 'improbable' state to a 'probable' state, from 'tidy' to untidy.  And when the concentration goes elsewhere, putting the large amount of energy into reversing this is very exhausting.  Especially to someone who is autistic. 

    There are too many distractions when trying to tidy up.  I come across things that are so interesting, some book or magazine, and it finds a new life.  And before long the time allocated for tidying has gone.

    Some things you might try:  allocating a set time for tidying each day.  Half hour a day might make a lot of difference.  And perhaps with some music or a radio programme (I am a radio four fan myself), your son might be able to do the tidying up while engrossed in listening through his headphones.

    Being resistant to having a cleaner is part of the 'resistance to change' and also part of the nature in wanting to do thinsg his way and making his own decisions.   The greatest problem with someone else coming in is that your son is attached to things, he has not just left rubbish on the floor and on surfaces and chairs, but things he thinks will be useful.  So he must be included in any 'cleaning' that is done as it could cause great trauma him finding that things had been disposed of without his permission.

    You might buy some plastic containers (large ones) so he can sort things into them that he finds useful and make it easier for him to clean up what even he would concede as 'genuine' rubbish.  There has to be some sort of compromise over the number of containers he has, but he might like to organise his things into separate themed boxes for him to sort out properly later, at least that may make it easier to clean the floor or other surfaces. And once in the containers, they must find a proper home in somewhere readily accessible.  Even if the storage place for these containers is just a shelf system behind a curtain, it will be a lot tidier.  But things must always be accessible, not being readily accessible will set the untidiness off again.

    I hate living in a flat.  There is never enough room, not enough room for my collections of things, not enough space to put cupboards and drawers to keep things.  Flats were certainly not devised with autistic people in mind.

    I think you have to accept that your son is not likely to change.  This is due to his makeup.  Things might get better for a few weeks, especially if the flat is tidied he might try to keep it that way for a while.  But long term it will get worse.  His flat will quickly become too small for things he accumulates, he will get so engrossed in other activities and forget to put things away.  This is not deliberate or laziness, it is the way he is.  And no amount of nagging will change him.

    I drove my first wife mad with the mess I used to make. My second wife is a bit more understanding, but that is mainly because she is not so concerned herself about putting things away.

    Your son may find some satisfaction in cleaning the fridge, cooker and bathroom.  I know I can spend ages getting them clean, removing every bit of dirt.  But these are not jobs that should be 'rushed'.   If he can spend a couple of hours cleaning the fridge for example, and then make sure everything is in sealed containers, it is not overstocked, if he is like me he will find that easier to keep clean.  Buying thngs as he needs them rather than on the offchance might be an idea.  Your son might like a regular 'timetabe' of food so every Monday he has the same menu, every Tuesday has the same Tuesday menu, etc.  Doing food shopping twice a week will help stop accumulating things from a weekly shop that are forgotten about and not used. 

    Only having a few bits of crockery and cutlery might stop using every piece and then not washing it up.  Just a couple of plates, cups and knives and forks will certainly be a lot less overwhelming than having a dozen plates and cups to wash up.

    I can understand his reluctance to be 'labelled' as autistic or aspergers.  I am now at ease with this myself, I accept it and being autistic makes me who I am.  I am sure as he gets used to saying the words he will get used to them.  I prefer the term 'autistic' myself, I am autistic.  And if people have a problem with that, it is their problem.  It is a part of the diversity of the human animal and nothing to be ashamed of.

Children
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