Reader dilemma: 'Our son is 34 with an IQ of 85, and spends all his time in his room. What will happen to him when we're no longer here?'

"While there are parents around, children cannot help but feel slightly infantile, however much they love them. I feel it’s only when your parents have died that you really grow up"

(Rex)

Dear Virginia,

Our son is 34 and has only had one job for six months since he left school. He walked out of it. He has an IQ of 85, no self-confidence, and is basically frightened of life, spending almost 24 hours a day in his room in self-imposed isolation and on antidepressants. We don’t know how to help him and even talking to him is very difficult. I am now 75 and my wife is three years younger. His three brothers are out there making their own way and doing quite well. But what will happen to him when we are no longer around? Where can we get help?

Yours sincerely, Brian

Virginia says

There’s a very interesting scientific principle that might help you look at your problem in a slightly different way. It’s the Heisenberg Principle, which says, among other things, that “the act of observation affects the sub-atomic particle being observed”.

Now, I know your son isn’t a sub-atomic particle, and this principle only applies to microscopic things, but I’m sure you get my gist. Which is that, when you take you and your wife out of the equation – when you’ve died – the circumstances for your son will change in a fundamental way. Your just being there affects the way he is. Now, it’s true that, when you die, he might well throw up his hands and give up completely. Alternatively, he might, curiously, blossom in his own odd way, take over the house and start to make a life for himself. While there are parents around, children cannot help but feel slightly infantile, however much they love them. I feel it’s only when your parents have died and you are in the firing line yourself that you really grow up.

Take you and your wife off the scene, and, assuming that nature abhors a vacuum – sorry if I sound like someone taking science GCSE – the situation will change. You haven’t really taken into account, either, how your three sons will behave when you have died. While you’re around, they, quite reasonably, wash their hands of their brother, thinking that, thank God, you’re around to keep an eye on him so they can get on with their lives. But once you’re not around, they may well spring into action. They’d be pretty grim brothers if they didn’t. It might, actually, be worth consulting them now and asking what they plan to do about their brother once you’ve left the scene.

You’ll see from some of the readers’ answers that there is help available, and although you can’t force your son to visit a doctor or accept help from social services, it might be worth pushing for it a little harder than you have in the past. If you said how very worried you are about him and how you can’t sleep at night for anxiety, it might press him into at least giving some kind of help a go, even if he didn’t persist.

It is his fear that needs addressing, not his IQ, because IQ is not really a marker for leading a happy and fulfilled life.

You might also get help from contacting the mental-health charity SANE on 0300 304 7000. It doesn’t sound as if your son is officially mentally ill, but he clearly has big social problems, and SANE is there to give you emotional support. They may even be able to suggest groups where you could meet other parents and carers in similar situations to yours, so that you wouldn’t feel so alone.

Readers say...

Enlist help now

How hard for all of you, especially your son. Mencap Direct (offering specialist services for people with learning difficulties) has a helpline on 0808 808 1111. They can put you in direct contact with services in your area. They also provide information on wills and trust funds, residential care and other topics. This will help you find your way through the maze of questions you may want to ask and decisions that will need to be made.

I suggest you enlist the help of his brothers to help with the almost inevitable battles with the authorities. Your son might well feel supported by regular visits from a specialist befriender/advocate. It will be very important for him to feel that his voice is being heard and that he has a choice in what happens to him.

You might be able to cope better if you join a carers group. Carers UK 0808 808 7777.

Elisabeth

by email

Seek a proper diagnosis

You say that your son has an IQ of 85, but give few further details. The use of IQ testing as an indicator of ability is rarely used on its own these days and often not used at all. It is increasingly seen as out of touch with modern theories of learning and development, and in any case, IQ is a fluid and unpredictable thing. If an IQ score is the only diagnosis your son has ever received then he has been poorly served by whatever schools and colleges he has attended.

I suspect that he may have what is called a “learning difficulty”. This could be a “specific learning difficulty”, such as dyslexia, which affects the ability to process words and numbers, or a “pervasive development condition”, such as autism, which can effect someone’s ability to relate to other people and their surroundings. Contact your local authority to discuss diagnosis and also ask about the provision locally for adults with learning difficulties. There are some very good projects out there, often run by colleges, charities or other providers, many of which will give support for returning to work. There may also be provision for helping your son find accommodation and supporting him as you and your wife get older and feel less able to support him on your own.

One last thing. I know it’s hard, but you must try to stop comparing him to his three brothers, who you say are “doing quite well”. Statistically, where there are as many as four siblings, there is a fair chance that one will have some sort of learning difficulty. Accept that, and move forward together.

Andrew Colley

Lecturer in Special Education, University of East London, Cass School of Education and Communities

Next week's dilemma

Ever since my children left home I have become unaccountably anxious and depressed. When they were at university, we used to see them in the holidays, but now they have moved out, my life seems completely empty and I am extremely low. I know it’s “empty nest syndrome” and people say that I should do something to take my mind off things, but even though I’ve taken part-time work as an accountant – I work at home – I still feel wretched. What can I do? My husband says we should get a dog, but I can’t see that helping much!

Yours sincerely,

Honor

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