my son and his deterioration

My 17 yo son has recently tested positive for autism. He is getting increasingly withdrawn, and getting dangerously thin with not eating. It is the second week now he hasn’t seen his counsellor as he is in bed 24/7 and is becoming increasingly withdrawn. We don’t know where on the spectrum he is at the moment, we don’t know where to turn to get this sorted.  It is impossible to get a dr’s appointment, it is a 3 week wait and when he does get there he isn’t taken seriously.

I just don’t know where to turn anymore, I can see he’s deteriorating, I try getting him up out of bed and he goes back to sleep a minute later, we have tried to get him downstairs but he won’t eat, I’ve tried letting him upstairs with it, he won’t eat. Today he has had some toast but that will most likely be it for the day.

We have done research into autism after he tested positive and he has a lot of the characteristics of Asperger’s but again I’m lost for what best to do as we don’t seem to be getting anywhere at all.

Anna Sob

Parents

  • ANNA wrote:

    My 17 yo son has recently tested positive for autism. He is getting increasingly withdrawn, and getting dangerously thin with not eating. It is the second week now he hasn’t seen his counsellor as he is in bed 24/7 and is becoming increasingly withdrawn.


    In having recently been diagnosed, and along with his age, he is going as most people do through a period of adjustment, which is sometimes referred to as post diagnostic blues, or the post diagnostic hangover ~ otherwise referred to as having an identity crisis. Everything in a sense makes sense in an uncomfortable and unfamiliar way, being that autism is a life long condition, and hopes of dealing with the difficulties involved can seem insurmountable, at first.

    This period of adjustment though involves various stages that coincide with each other to different extents, at different times, as follows:


    • SHOCK & DENIAL
    • PAIN & GUILT
    • ANGER & BARGAINING
    • DEPRESSION, REFLECTION, LONELINESS
    • THE UPWARD TURN
    • RECONSTRUCTION & WORKING THROUGH
    • ACCEPTANCE & HOPE

    Each and all of these are "together" requisite stages of integral adjustment, and learning how to work with and through these adjustments in an affirmative way is really useful. So:


    ANNA wrote:

    Today he has had some toast but that will most likely be it for the day.


    This is good that he has eaten, as small amounts of food are good to start with, and are really all you can and should expect of him at the moment perhaps, given that he could possibly have depressive nausea.

    Have you considered or discussed maybe a fluid diet for the time being? ~ keeping in mind the need for proteins, fats and carbohydrates, as without which feeling run down and depressed is quite usual as a side effect. 

    Incidentally ~ I normally go off eating solid foods at this time of the year myself actually, but milky ready-break, veg blended soups and smoothie fruit juices keep me going, and I also find mineral and vitamin protein powder shakes such as SPIRU-TEIN GOLD to be quite motivational and uplifting ~ from health food shops, which might be worth considering possibly.


    ANNA wrote:

    He finds it hard to sleep, he stays awake all night and sleeps with his head under the cover all day. We have tried kalms but he says it makes his mind slow.


    One problem with Asperger's Syndrome is sensitivity to ultraviolet light, which makes the day light hours rather intense or harsh and quite literally nerve grating for some of us, and the night-time is the only time a sense of comparative calmness occurs during the day ~ enough to calm down for sleep at dawn.

    For this reason I and others as such are night-shifters or night-owls, so this might be worth considering in relation with your sons sleeping pattern and so fourth. I mean if he is a 'night-shifter' trying to sleep for the day-shift it might be a mission impossible, which may be possible once a regular sleep pattern has been established and comfortably without pressure, habituated.

    Another consideration for improving quality of sleep more naturally is a substance called 'Black Seed Oil', otherwise known as "The Blessed Oil" (or Nigella Sativa if you want to get technical), and having a teaspoon of which with water just before going to bed can make even a few hours sleep feel like loads more. The taste is not necessarily to everyones liking at first, but it really does work well once you get off to sleep. Check perhaps:


    https://www.youtube.com/watch?v=VdxvLMZT2CI


    In respect of the diagnostic aftermath in terms of the 'identity crisis' thing ~ I read a book called 'The Complete Guide to Asperger's Syndrome', by Tony Attwood, which helped me to identify with myself in terms of growing up as an Aspergian, and to reevaluate that no one could through my upbringing be legitimately held responsible for not understanding me or my needs.

    Another book that really helped me to Aspergenically identify was 'Look Me In The Eye, My Life With ASPERGER'S', by John Elder Robison in terms of living, working and that strange state of affairs called socialising. Another thing that really helped me was watching Youtube videos by people with Asperger's Syndrome discussing the pros and cons involved with the condition, people I could really relate with and really feel for ~ even though I have a very high EQ or emotional quotient myself.

    I did though spend a year out after my diagnosis, keeping very much to myself, which was a much needed time away from the hustle and bustle of it all socially, which allowed me to just feel my feelings through from good to bad, before reading the books, watching the Youtubings and coming to terms with things as they were then a year back now. Getting involved with this website has been a major bonus on the journey of self discovery too.


    ANNA wrote;

    He has also explained how he is unable to love people or care about things, which is hard to come to terms with.


    Well, again with the diagnostic aftermath and lifelong prelude, he will in part be numbed up in the wounded sense, and not having identified and 'tuned-in' with others on his wavelength, it could be just a case of getting involved with others who are, and developing the 'musculature' of the heart and soul and all that.

    In terms though of autistic people feeling or seeming or actually being emotionally off-line, detached and so fourth, you might find the following link to a thread here on this site useful:


    http://community.autism.org.uk/f/miscellaneous-and-chat/11136/on-the-ontological-status-of-autism-and-double-empathy


    ANNA wrote:

    I feel so guilty when their laughing and joking together that Karl is feeling so down and hopeless.


    In respect of feeling pain whilst your son is feeling so down and hopeless as such, that is in the parental sense quite understandable, very much so indeed. But ~ as for this feeling guilty about it, this seems only to be understandable as being a mistake, or at most a delusion ~ being that no one can as such rightfully be held accountable; except in the most creditable and honorable sense of you doing the very best you can in the very very difficult circumstances you describe.

    The fact you are reaching out for assistance in order to and whilst also in fact you are assisting your son to the very best of your ability ~ this is nothing short of entirely commendable.


    ANNA wrote:

    He tolerates me being there but he finds alot of converstaions a bit unbearable as hes mentioned he expands every situation/conversation alot more than most, he's very specific with everything.


    I know 'precisely' what he and you mean in this respect, and this will apply for many who are community members here also ~ in terms of being somewhat familiar with it or as personally experienced as such. Of course, providing we can expand upon things for you, if you have any questions regarding being autistic, having Asperger's Syndrome, or ASD etc, just ask.


Reply

  • ANNA wrote:

    My 17 yo son has recently tested positive for autism. He is getting increasingly withdrawn, and getting dangerously thin with not eating. It is the second week now he hasn’t seen his counsellor as he is in bed 24/7 and is becoming increasingly withdrawn.


    In having recently been diagnosed, and along with his age, he is going as most people do through a period of adjustment, which is sometimes referred to as post diagnostic blues, or the post diagnostic hangover ~ otherwise referred to as having an identity crisis. Everything in a sense makes sense in an uncomfortable and unfamiliar way, being that autism is a life long condition, and hopes of dealing with the difficulties involved can seem insurmountable, at first.

    This period of adjustment though involves various stages that coincide with each other to different extents, at different times, as follows:


    • SHOCK & DENIAL
    • PAIN & GUILT
    • ANGER & BARGAINING
    • DEPRESSION, REFLECTION, LONELINESS
    • THE UPWARD TURN
    • RECONSTRUCTION & WORKING THROUGH
    • ACCEPTANCE & HOPE

    Each and all of these are "together" requisite stages of integral adjustment, and learning how to work with and through these adjustments in an affirmative way is really useful. So:


    ANNA wrote:

    Today he has had some toast but that will most likely be it for the day.


    This is good that he has eaten, as small amounts of food are good to start with, and are really all you can and should expect of him at the moment perhaps, given that he could possibly have depressive nausea.

    Have you considered or discussed maybe a fluid diet for the time being? ~ keeping in mind the need for proteins, fats and carbohydrates, as without which feeling run down and depressed is quite usual as a side effect. 

    Incidentally ~ I normally go off eating solid foods at this time of the year myself actually, but milky ready-break, veg blended soups and smoothie fruit juices keep me going, and I also find mineral and vitamin protein powder shakes such as SPIRU-TEIN GOLD to be quite motivational and uplifting ~ from health food shops, which might be worth considering possibly.


    ANNA wrote:

    He finds it hard to sleep, he stays awake all night and sleeps with his head under the cover all day. We have tried kalms but he says it makes his mind slow.


    One problem with Asperger's Syndrome is sensitivity to ultraviolet light, which makes the day light hours rather intense or harsh and quite literally nerve grating for some of us, and the night-time is the only time a sense of comparative calmness occurs during the day ~ enough to calm down for sleep at dawn.

    For this reason I and others as such are night-shifters or night-owls, so this might be worth considering in relation with your sons sleeping pattern and so fourth. I mean if he is a 'night-shifter' trying to sleep for the day-shift it might be a mission impossible, which may be possible once a regular sleep pattern has been established and comfortably without pressure, habituated.

    Another consideration for improving quality of sleep more naturally is a substance called 'Black Seed Oil', otherwise known as "The Blessed Oil" (or Nigella Sativa if you want to get technical), and having a teaspoon of which with water just before going to bed can make even a few hours sleep feel like loads more. The taste is not necessarily to everyones liking at first, but it really does work well once you get off to sleep. Check perhaps:


    https://www.youtube.com/watch?v=VdxvLMZT2CI


    In respect of the diagnostic aftermath in terms of the 'identity crisis' thing ~ I read a book called 'The Complete Guide to Asperger's Syndrome', by Tony Attwood, which helped me to identify with myself in terms of growing up as an Aspergian, and to reevaluate that no one could through my upbringing be legitimately held responsible for not understanding me or my needs.

    Another book that really helped me to Aspergenically identify was 'Look Me In The Eye, My Life With ASPERGER'S', by John Elder Robison in terms of living, working and that strange state of affairs called socialising. Another thing that really helped me was watching Youtube videos by people with Asperger's Syndrome discussing the pros and cons involved with the condition, people I could really relate with and really feel for ~ even though I have a very high EQ or emotional quotient myself.

    I did though spend a year out after my diagnosis, keeping very much to myself, which was a much needed time away from the hustle and bustle of it all socially, which allowed me to just feel my feelings through from good to bad, before reading the books, watching the Youtubings and coming to terms with things as they were then a year back now. Getting involved with this website has been a major bonus on the journey of self discovery too.


    ANNA wrote;

    He has also explained how he is unable to love people or care about things, which is hard to come to terms with.


    Well, again with the diagnostic aftermath and lifelong prelude, he will in part be numbed up in the wounded sense, and not having identified and 'tuned-in' with others on his wavelength, it could be just a case of getting involved with others who are, and developing the 'musculature' of the heart and soul and all that.

    In terms though of autistic people feeling or seeming or actually being emotionally off-line, detached and so fourth, you might find the following link to a thread here on this site useful:


    http://community.autism.org.uk/f/miscellaneous-and-chat/11136/on-the-ontological-status-of-autism-and-double-empathy


    ANNA wrote:

    I feel so guilty when their laughing and joking together that Karl is feeling so down and hopeless.


    In respect of feeling pain whilst your son is feeling so down and hopeless as such, that is in the parental sense quite understandable, very much so indeed. But ~ as for this feeling guilty about it, this seems only to be understandable as being a mistake, or at most a delusion ~ being that no one can as such rightfully be held accountable; except in the most creditable and honorable sense of you doing the very best you can in the very very difficult circumstances you describe.

    The fact you are reaching out for assistance in order to and whilst also in fact you are assisting your son to the very best of your ability ~ this is nothing short of entirely commendable.


    ANNA wrote:

    He tolerates me being there but he finds alot of converstaions a bit unbearable as hes mentioned he expands every situation/conversation alot more than most, he's very specific with everything.


    I know 'precisely' what he and you mean in this respect, and this will apply for many who are community members here also ~ in terms of being somewhat familiar with it or as personally experienced as such. Of course, providing we can expand upon things for you, if you have any questions regarding being autistic, having Asperger's Syndrome, or ASD etc, just ask.


Children
  • thankyou so much. This helps alot, i will try what you suggested

    I do have one question, as he isn't fully ready for a job by any means yet, would he need an "official" diagnosis that states where on the spectrum he is to recieve financial assistance such as PIPS? He has tried interviews in the past but with his lack of confidence, even though he answered each question extensivelt, have failed. x