Differential Diagnosis

Well, our son refused to talk to the CPN and woman from the autism team so we're no further forward.  I did read the book and there were some familiar themes in there but I think there are other problems with our son too, problems which more closely fit with diagnoses like mood disorder, OCD or psychosis.  Of course, without an assessment it's hard to tell what the primary diagnosis would be.  And we also have to respect his autonomy and decision not to have any assessments, even though we are all suffering in this and all desperately need help.  This seems to be a major stumbling block and so I'll house it in another thread.   

Many thanks.  I don't think he'd read a book.  He somehow has an aversion to reading, although I know he follows the news and reads stuff online.  but you have certainly given me some food for thought & I've downloaded a couple of the books.

 I take your point about "yet another psychologist" but our situation feels quite desperate.  It's difficult for us, of course, but he doesn't seem to have had any kind of life for the past 4 -5 years.  No friends, no studying, no going out at all.  This would be OK if he was happy, but much of that time has been spent on different strategies of ridding himself of negative energy and this is sad to see.  So i'm hoping he'll at least sit down with them for 5 minutes.  He mostly goes his own way (to his detriment, it seems to us) so I'll think of ways of presenting it to him.  A way of allowing him to continue doing what he's doing whilst having someone check on him once in a while and give him the opportunity, maybe, to learn more about himself?   

The problem, if it is autism, is you get hurt too often by encounters with the world outside. You don't have good social referencing and cannot identify 'norms' or get feedback on given situations by others. There is a tendancy to dwell on perceived hurts and obstacles which can negatively re-inforce the bad experiences. So you end up in the safest place - one room, with familiar clutter.

Given he has been treated for everything other than autism, he has probably had even less chance than most to work out what might be happening. And there is a point after which other people telling you what to think, what is wrong with you, or that you need help, the barriers go up permanently.

The problem is, the options he has at the moment, talk to yet another psychologist.

If it is autism, the rituals may be for security - similar to stimming. The negative energy may be what the rituals protect him from. The rituals are a means of keeping in control in a world outside that seems alien.

Something in this made me pick "Freaks, Geeks & Asperger Syndrome - a user guide to adolesence" by Luke Jackson (Jessica Kingsley Publishers 2002 ISBN 978 1 84310 098 0 - this code helps a librarian or bookseller find it). OK your son is 21 now, but the book is relevant to his recent life history perspectives. Luke Jackson's book is a bit precocious - at the time of writing 13 - so readers may wonder if he really wrote it. The content is light hearted and playful. There is a chapter on fascinations and fixations that covers a lot of things psychiatrists might approach as psychosis rather than autism. He describes for example ritual sequences he had to do before going to bed. In a life that lacks connectivity and where the outside world can be hostile, these compulsive rituals are making safe.

An amazing number of respondents on here have teenage and early adult sons or daughters who stay in their room, often linked up to their computer, for many hours, and they worry it is harmful. When you find the world difficult to handle, this is one safe place, and activities there are reassuring. What they are missing, from a non-autistic spectrum, may be contexts they are only too happy to avoid.

Poor self care is a fairly common symptom and relates to both executive function and sensory issues. Hair cutting, combing, washing and teeth cleaning may actually be very uncomfortable, even painful if hypersensitive. Clothing may be uncomfortable therefore some clothing favoured even when on too long. On the executive function side, remembering to think about keeping up appearances may be difficult, needing prompts, and there isn't the social pressure to be nice to be around.

Most people on the autistic spectrum feel like an outsider - that's why it is called "wrong planet syndrome". Not being able to use eye contact, facial expression, body language properly, and not able to read it in others means very little social referencing - no feedback from other people - lifelong - it never happens (much). You aren't on the same wavelength as other people.

I've suggested Luke Jackson's book because it might fit. There are others, but the things you are describing suggest to me his is closest. While it is early teen in its target audience, it covers the right ground. Another childhood perspective is "Martian in the Playground" by Clare Sainsbury, and there is Marc Fleisher's Making Sense of the Unfeasible - being an autobiography from childhood to early adulthood.

Would he read a book if presented to him?

Fortunately the autism team have arranged a home visit for this week, just to talk to our son about what they have to offer.

Unfortunately, he probably won't talk to them. 

He has this right, of course, but this refusal to engage is affecting us all.  Has anyone had any success in countering this?  it feels like a struggle of wills here and, of course, there are ethical concerns about coercion or even persuasion.  But our lives have been so badly affected by this that it is hard to keep going.  The balance has to shift, I think. 

Well, the appointment has gone.  Our son refused to attend. 

We have been waiting since before Christmas for this appointment with the autism team and this morning the CPN called to remind us about it. Fair enough. I said I’d do everything I can to get my son there. Then 10 minutes later the phone rang again with a woman wanting to speak to our son. So I let her! And then, to my utter dismay, all I could hear was no, no, no and no. Apparently this was the nurse from the autism team ringing to confirm as well, asking him whether he’d be coming along and, if not, whether he wanted another alternative appointment. Of course he doesn’t! He has a long history of non engagement. Doesn’t she know this? 

Well, I would have called her back, but of course it was one of those numbers withheld. So I called the EIP team who were able to put me through and then left a message for this practitioner.

But I guess the outcome is the same. He won’t go, they have to respect his autonomy and we’re left in the same position. I feel angry with her. Why phone up and give him the option? Don’t ask someone like him whether they’re coming, say you’re looking forward to seeing him and be encouraging, for goodness sake!

Disbelief. What on earth was the point of waiting for this appointment and pinning hopes on finally getting some answers? What is the point of an autism department that backs down and leaves off at the first (highly predictable) refusal? Surely they have others like my son who:

– doesn’t make eye contact
– hates meeting new people
– doesn’t like going into clinical buildings
– is afraid of meeting MH professionals

Of course, given the option he’s going to say “no.” And they’re going to respect his autonomy, even though he uses it in some seriously unhelpful ways. And say he’s got capacity, especially if they see it as an either/or thing rather than the shades of grey it seems to be. Our son is, just about, keeping himself safe, dressing himself and eating/drinking. So that must be alright then?

All I can say is that if that’s the way they operate they must have a LOT of cancellations.

There certainly are possibilities for change :-) A diagnosis can be the key that unlocks the puzzle.

Getting the right diagnosis for the underlying cause of his problems is important and it seems likely that ASD is the root of his problems.

You will all be ground down by the experience and you may all need help in picking yourselves up and getting to grips with the new knowledge of his problems. You may find it usful to discuss with the autism team your own AQ test score. IF (deliberately emphasised IF) you are affected then this can also make you more sensitive to problems that arise and you may benefit from consciously lifting yourself (with help from others) from the slough of despond that you have fallen into.

Thanks Recombinantsocks.  I'd not quite thought of it in that way but this makes a lot of sense.  This feels like a very entrenched family problem, as much as an individual one for our son, and to me it seems that we are finding out more about ourselves too.  I just hope that, whatever the team come up with, there are possibilities for change.  I can't bear to think of things continuing as they are and I'm so afraid that, the longer this goes on, the more difficult it'll be to move into a better way of living.  I'm so fed up of the fear, the isolation, the grime and the overall sense of desperation in trying to evade something that is, by its nature, impossible to pin down.  "Negative energy" seems like a description that almost deliberately places the problem out of reach and unamenable to help from others.     

You can have ASD and be unaware of it and the people around you can be unaware. ASD on its own has very subtle signs and differences in behaviour. It is frequently an invisible disability. I was blissfully unaware of this for 56 years (but the signs were there if you knew what to look for). The strangeness of ASD leads to social difficulties, isolation, conflict, misunderstandings etc that ultimately can lead to mental disturbance. I guess that this might be close to going "Stir crazy". I suspect that this is where your son has got to. The symptoms are not those of ASD but they are symptoms of the mental disturbance that are the consequence of undiagnosed ASD. I ended up with depression, severe problems in thinking that people weere against me, and now have anxieties that get in the way of everyday life. I was behaving strangely, I was not functioning well in a lot of ways, it had got to me. Having a diagnosis can be a revelation and it can be the key that unlocks the door back to operating successfully in the real world.

Therefore, you can't really look for a differential diagnosis between ASD and psychosis but the difference between psychosis and being stir crazy which, I guess, will look quite similar. The causes are different though. Someone who has been locked in a cell for 30 years can blame it on isolation, a true psychotic can lay the blame on chemical imbalances in the brain, a person with ASD will atrribute it to years of isolation and social conflict.

The psychiatrist seemed very sure of her ground in making this referral to the autism team.  And, funnily enough, on our first contact with services the CPN asked whether we'd thoughta bout "high functioning autism."  Well, my husband is a teacher and has a little experience of working with adolescents with various labels and at the time we both thought, no, there are no striking features and the behaviours are so extreme that a boundary has been crossed - the loss of contact with "reality" that is the hallmark of psychosis.  But now we are wondering.  And also about our own blind spots.  It may well be that we all have features and I really want to know.  

Looking back over the years I've had a lot of problems, usually involving my relationships with others in more formal settings.  OK 1:1 and doing exams etc (it's between me and a bit of paper, so that's OK).  But major difficulties in groups and ongoing problems with driving (cos others can judge me and it seems like a set up for conflict) and speaking in front of others (more negative judgement and not feeling I can appear quite normal for long enough).  It's fair to say that I haven't lived up the the early promise suggested by my exam successes - the theoretical world seems to me to be much safer than the real one!       

My opinions follow, I'm a sufferer rather than a doctor and I haven't met your son so it is all ideas rather than facts.

The autism team should be working under the direction of the psychiatrist or at least in close co-operation with him or her. They will also be very used to working with autistic people who are suffering from mental health issues. I expect that their caseload will be predominantly people with mental health problems of one sort or another.

Everything you have said about him suggests to me that ASD is the primary problem. Poor self care, diet problems, avoidance, reclusiveness. You can find all of these issues described by posters on this forum. He may have been unable to communicate with the doctors well enough for them to come to a proper diagnosis before. He will have presented as mentally unwell and they have tried treating for psychosis but no improvement has occurred. This suggests to me that they were effectively going through a process of elimination. If you can't communicate with the patient then your options are limited and he isn't the first to have been diagnosed with another disorder before coming to a diagnosis of autism.

His outlook is much much better with a diagnosis of ASD compared to the outlook with psychosis.

Thanks Recombinantsocks.  it's good to know that there's at least a chance of recovery.  It has been a long haul, though, and I'm not sure that the autism team will even agree that his difficulties do relate to autism, as the psychiatrist suspects.  if this could lead to effective help then I certainly hope so.

At the moment I suppose that we are, in fact, allowing him to discover ways of regaining control.  To us the ways seem negative (avoidance, bizarre exercises, extremely poor self care, fasting etc) but I suppose that, over time, this might change.  I'm worried, though, that most of this started around age 16 or so, with only a few signs before that age.  Nothing at all was picked up at school, apart from very poor handwriting.  Might this mean that the weight of evidence is towards a diagnosis of psychosis?  I guess I'll have to wait until the appointment in September, but it seems as though we've spent the past 4 years waiting for an appointment and then a treatment/intervention that would actually be helpful or, indeed, that our son would accept.    

There are posters on the forum who have recoved from the reclusive state that your son has got into. His autism specialists stand a better chance than anyone else of doing the trick but I expect that it will seem all very mysterious and strange unless you have been through it yourself.

His blanking may be due to depression (a common problem for undiagnosed ASD sufferers) or it may partly be due to the lack of expression and responsiveness that is typical of people with autism.

He is not likely to respond well to pressure or persuasion and may need to be "allowed" to discover that he can take positive control of himself again. You have to be optimistic - there are good reasons for you to be optimistic as this is a disorder that has had a lot of intensive study in recent years.

I think that sensitivity and bullying were both factors and that he was already running into major difficulties before he even went to college.  So it wasn't the most auspicious start for him.  But now it's been 3 years since he last attempted to go to college and we've been holding things steady and providing what we think is a supportive background.  Still, though, we get blanked most days, he stays in his room and virtually never leaves the house.  Finding a way in is well nigh impossible.  I daren't hope for too much from the autism team appointment.     

Being over sensitive to criticism is common for people on the spectrum. Also, we get criticised and bullied as we do things differenty. He may be feeling criticised due to over sensitivty or perhaps he was criticised or even bullied. There are a number of possibilities for things that triggered his change. Perhaps the change was overwhelming, perhaps he struggled with making new friends, perhaps it was just a matter of time and that it wasn't anything to do with going to college.

Over the years I have come to accept that there is certainly something "different" about me.  I've been called "weird" more than once too.  But I've kind of explored the difference, without really naming it as anything in particular.  Well, other than very general terms like intraversion which I've explored quite a lot.  So, funnily enough, Susan's book is already on my Kindle from around a year ago, plus I have, for example, Elain Aron's books on sensitivity on my shelves too. 

Generally I would say that the world has seemed too hard-faced for me, that I react to this (some would say over-react, of course) and tend to panic or become fearful.  Needless to say, this did me no favours in the world of work, which I found quite harsh and unforgiving. 

Now, though, I have been able to retire early (due to a physical condition) and I would say that we have quite a calm and undemanding environment here at home.  I had been hoping that providing a stable and comfortable home would help our son more than it actually seems to have.  But that's not to say that it won't ever.  In the meantime, I don't know how to help him to unravel his issues, especially since he won't accept my help, or anyone else's for that matter.  He seems to inhabit a very limited world of his own, trying to counter an invisible world of negativity and performing strange exercise rituals to help him in that.  None of this was really apparent before the age of around 16, although prior to that he had a certain self-contained quality to him, even when socialising (which he did a lot).  He also did well in his GCSEs and all of this seemed to suddenly worsen when he went to college.  It did look very like psychosis or schizophrenia (no voices, but strong delusions about being attacked by negativity, very poor personal care, total withdrawal) but now I am wondering.  Certainly the early intervention in psychosis team have been unable to unravel it all.  And, in spite of all my reading (and my own previous escape route from a horrible office job in accountancy into the softer, more bearable world of counselling) I don't know what more to do.

Overall I suppose I'll have to wait to see what the autism team can advise but so far I've not been too impressed by the professionals.  Of course, they haven't lived it from the inside and, naturally enough, it shows. 

A score of 31 is some considerable distance from average. Other posters on the forum who have considerable issues have posted similar scores. It all depends on the environment, on the school you go to, on parents attitudes, on intelligence etc etc. Genetics means that your parents and your offspring will have different sets of genes and may have difficulties or not depending on the roll of the dice. I can trace back odd behaviour through several generations. I am much more comfortable that it can be dealt with by future generations as understanding will grow with time. It is unfortunate, but no worse than that, that your son wasn't spotted or diagnosed earlier. This is an invisible condition so it often goes unspotted.

It is entirely possible to manage well or thrive with the condition if it is understood and if the environment can be adjusted or selected to be congenial. Your son needs to have his issues unravelled but I think that this should be entirely feasible as long as he gets the right understanding from everyone around him.

You might like to read Susan Cain's "Quiet" book. It talks in terms of the particular strengths that intraverted people have. She also did a very good talk on TED which you should be able to find.

I just tried it and seem to be borderline with a score of 31.  As to what this might mean, I'm not sure.  It seems to me that I could nudge the score a few point in either direction depending upon my mood on the day.  Or that, say, 10 years ago my score would have been higher.  30 years ago it would have been higher still.  So then my question would be whether such a diagnosis would usually remain stable over time.  But I'm also curious about my own perceptions of what I consider to be the problems.  I might, being a bit of a sensitive type, be magnifying them such that a slight difficulty to me seems much bigger than it actually is.  Or I might be underplaying them - after years and years of going against the grain and trying to fit into situations I really wanted to avoid, I might finally have developed various strategies that work for me. 

My other area of concern: when I was a teenager I thought I was very nervous and highly strung and this was basically fed back to me by various others in my family and my teachers too.  Words like "shy" and "timid" were often used.  And I often preferred solitary pursuits.  But that could just mean I'm more of an introverted person, still with various associated problems (in a world dominated by extraverts), but just a bit of a loner.  I'm wondering when something that could just be seen as personality becomes diagnosable.  And also what this might mean for my son, who has all of the traits I had but then with some very distressing beliefs added in. 

The heritability bothers me too.  I come from a long line of sensitive people.  Some did very well, others dropped out and/or developed significant problems (severe depression, alcoholism, "weird" behaviours that made them stand out).  It would be very hard for me to say what made the difference and I would hate it to be all down to uncontrollable factors.  One uncontrollable factor, for example, seems to be that the males in my family seem to fare worse than the females.  I suppose that when it comes to genetics I would have to hope that there would be lots of hope in the field of epigenetics to counterbalance my fears. 

Of course, ASD is often inherited via one, or both, parents. Have you tried doing the aqtest to see if you have similar tendencies? aspergerstest.net/.../

I managed 56 years without thinking anything was different between me and other people and I hadn't learnt how to negotiate my way through life without conflict and misunderstanding. I still can't tell thedifference between people's intentions/moods/personality types but at least I'm aware that it is a thing I might benefit from studying and practicising and giving myself leeway in case I get it wrong.

Yes, it does feel a bit like we inhabit different worlds, albeit in the same geographical location.  It makes me wonder about myself too, though, because I've often been in situations (school, work and social) where I've felt like a two-headed alien.  Looking back at theose occasiona, I'm not sure how reachable I was myself.  maybe little bridges have been built as I've grown older.

I'll probably get the Dummies book as the Gaus one isn't available on my version of Kindle and, since we've had all these problems, I've been building up too many paperbacks on mental health issues.  None of them, ultimately, has helped but I might have been looking at the wrong thing (psychosis and schizophrenia rather than autism).

Not seen my son today.  He quite often seems to be avoiding us and can go for days without saying much at all.  It all feels unbridgeable at the moment.

People with mental problems are hard to reach as you aren't likely to have much idea about what is going on in his mind and he is unlikely (particularly if he has ASD) to understand your mind or motives. There is an american website called "Wrong Planet" for aspies because we seem to be a bit like aliens in the wrong place.

I found the Gaus book particularly accessible and it was suddenly like having a manual that explained me to myself. I would guess the dummies guide might be similar. Some of the other works are useful but probably too detailed to begin with.