Son has refused the assessment

Well, the CPN and woman from the autism team came in the front door and our son escaped out the back!  He had initially agreed to the assessment but, he says, only because he felt that the psychiatrist was too insistant and he felt coerced.  And now he's saying he doesn't want it, he won't see them and it's his decision.  The trouble is, we have to live with the consequences of his decision too.  He's mucky, withdrawn and spends all day in ritualistic behaviours to avoid "negative energy" or else on his computer.  He also quite frequently blanks us and rarely goes out.  No friends and no contacts over the phone or internet either.  There's a real atmosphere in our home and, even if he insists that what he's doing is more likely to make him happy, I think he is making himself, and the rest of us, very miserable indeed.

Of course, we are running into issues around mental capacity here.  The psychiatrist insists that he has capacity and we, of course, would always want to promote autonomy and independence where possible.  But to us it seems that he is in the grip of delusional beliefs and that, without the effects of possible autism plus associated mental illness through years of non recognition of this, he certainly wouldn't be choosing to spend his life like this!  What on earth can we do?  He seems to be using his capacity to ruin his life and ours too!   

Parents
  • There are two aspects of autism not explained by the Triad of Impairments, because they aren't good for differentiating autism from other causes. They are social interaction and sensory issues.

    Autism involves difficulty reading facial expression and body language and difficulty generating such information. Most socialisation is informal and relies heavily on facial expression and body language to provide an accent to speech.

    Therefore someone on the spectrum has to work hard to keep up with social dialogue, and that is quickly tiring. It often involves guessing how the conversation is progressing and frequently losing the thread. As they get tired they feel more and more out of it. Therefore many people on the spectrum give up trying to integrate socially, even thiough that deprives them of the feedback and reassurances you get from social referencing.

    Because teenagers go so heavily into informal sociailsation about the most ridiculous topics, teenagers with autism often do retreat into themselves. You may feel it is unhealthy, but if he cannot do it properly, finds it tiring and disorientating, trying to force him to do it, when it causes him distress, just because it is normal for you, seems demented. It it really that important he socialises? 

    People on the spectrum are often more sensitive to sound and visual stimuli. Therefore many social environments are uncomfortable for that as well. Teenage socialisation is usually in a room with a television or radio on loud, and everyone talking at once. That's agonising for many people with autism.

    Most of what you describe is normal for autism. He may, if given the right encouragement, open up a bit more. But subjecting him to being probed by various people is clearly not helping.

    The hygiene and self care issues are often to do with poor executive function. A timetable with some associated novelty to make it more interesting might provide prompts to bathe more often etc. Another factor is that water can be uncomfortable for some people on the spectrum for sensory reasons, as can hair cutting. But that can be explored in simpler ways than treating him like an alien and having him studied by mad scientists.

Reply
  • There are two aspects of autism not explained by the Triad of Impairments, because they aren't good for differentiating autism from other causes. They are social interaction and sensory issues.

    Autism involves difficulty reading facial expression and body language and difficulty generating such information. Most socialisation is informal and relies heavily on facial expression and body language to provide an accent to speech.

    Therefore someone on the spectrum has to work hard to keep up with social dialogue, and that is quickly tiring. It often involves guessing how the conversation is progressing and frequently losing the thread. As they get tired they feel more and more out of it. Therefore many people on the spectrum give up trying to integrate socially, even thiough that deprives them of the feedback and reassurances you get from social referencing.

    Because teenagers go so heavily into informal sociailsation about the most ridiculous topics, teenagers with autism often do retreat into themselves. You may feel it is unhealthy, but if he cannot do it properly, finds it tiring and disorientating, trying to force him to do it, when it causes him distress, just because it is normal for you, seems demented. It it really that important he socialises? 

    People on the spectrum are often more sensitive to sound and visual stimuli. Therefore many social environments are uncomfortable for that as well. Teenage socialisation is usually in a room with a television or radio on loud, and everyone talking at once. That's agonising for many people with autism.

    Most of what you describe is normal for autism. He may, if given the right encouragement, open up a bit more. But subjecting him to being probed by various people is clearly not helping.

    The hygiene and self care issues are often to do with poor executive function. A timetable with some associated novelty to make it more interesting might provide prompts to bathe more often etc. Another factor is that water can be uncomfortable for some people on the spectrum for sensory reasons, as can hair cutting. But that can be explored in simpler ways than treating him like an alien and having him studied by mad scientists.

Children
No Data