Supporting our son

Hi Trainspotter

Thank you so very much for your very helpful suggestions & insights into why our son finds it so hard to organise things around him . Reading your  explaination of how you experience things has really helped . I think that I am mildly on the spectrum too ( my husband Brian says I definitely am ! ) & I think that the second law of thermodynamics is absolutely true . I get very flustered and agitated when things get a bit untidy because I find it very confusing and tiring to put things into reverse . I think that this is definitely how Leaf experiences things - X ten . 

Helping me to understand that tidying up presents an almost infinite variety of distractions is really helpful too . It feels like every individual object has the ability to command attention so that it is impossible to be able to see an overview of what you need to do & this contributes to an overwhelming sense of confusion. 

I think that your point that Leaf is very attached to the things that he owns and these things are very important to him is very true. When I read your explanation , it was like " Ahh yes - Of course !! " Being casually told that something important to you is " rubbish " is disrespectful , & is a loss of control over what belongs to you . Leaf's social worker is lovely & the NAS team from Cardiff are helpful& understanding , but I wonder sometimes if some of the things that you have explained to me have been overlooked . You have given me some ideas about how I can explore the best way to help Leaf with these issues & to discuss some of these insights and possible approaches with Rod ( Leaf's social worker) . I do wish more professional were  trained in how to support people who are neuro diverse .

Allocating a set amount of time each day is a great idea . And keeping this to an amount that Leaf feels able to cope with is a good one too . It's also helpful to understand that this is absolutely part of Leaf's fundamental make -up & very much part of being neuro diverse . I think that your suggestion of putting things into themed boxes which must be easy for Leaf to access is really helpful too . Unfortunately , after the deep clean last year , everything was put into large cardboard boxes , in no particular order & stacked against the wall . This has caused Leaf considerable distress , as he doesn't know where things which are important to him are , & so he has needed to pull things out of the boxes in order to find the implement he needs ( Leaf really likes making intricate anime models ) .

It's also helpful to learn that you find living in a flat difficult . Leaf loves collecting things , and like you have described , this makes living in a small flat very challenging for him . Leaf likes to collect very specific things ; pens & anime models ( of which he has a lot ! ) I think that is exactly what happens ; he gets so engrossed in doing something , that he just forgets to put things away . At the moment , he is building a dolls house . It is 33cm square . 

Concentrating on one activity , such as cleaning the fridge is a really good one , as is having a menu for each day . Until recently , Leaf ate the same thing every day for breakfast at college . Also shopping frequently & on the same days is good too . 

 Another great suggestion is keeping crockery & cutlery to a minimum , so that it is not possible for things to build up .

Thank you so much for sharing your insights & experiences . I absolutely agree ; being neuro diverse is not a problem & absolutely nothing to feel ashamed about .If other people don't understand or cannot accept this , then it is absolutely their problem . If it weren't for wonderful people like Alan Turin and Dirac , the word would be a much more impoverished place - & I would not be able to talk with you on this forum!

many. many thanks 

Onceina

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.