Published on 12, July, 2020
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 He is getting increasingly withdrawn, and getting dangerously thin with not eating. It is the second week now he hasn’t seen his counsellor as he is in bed 24/7 and is becoming increasingly withdrawn.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
... but was it a sudden deterioration, or a gradual one?
did it coincide with whatever "tested positive" referred to, or perhaps with this female support worker no longer having contact with him? How long had this person been providing some support?
Unfortunately being autistic, both diagnosed & undiagnosed, does not automatically qualify him for PIP.
PIP depends on his lack of ability to carry out normal day to day tasks.
ANNA wrote:
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?
Sorry ~ I had assumed incorrectly (as it seems) that your son had actually been diagnosed as being autistic; in the "official" sense. None the less though, in order to receive benefits such as PIP, an official diagnosis of autism, and or other issues (such as the dietary problems and the depression etc) would be required, yes, most certainly. Any record of professional involvement with your sons needs is essential.
If though you need information about autism and getting diagnosed, the NAS can send you an information pack about it ~ if you telephone: O808 800 4104, and select option 4 (To request an information pack to be sent) and follow the instructions for leaving your details on their answering service.
This can be done at any time during the day, or night, whereas the other four of the five options apply during the NAS opening hours, which are: Monday-Thursday, 10am-4pm and Friday 9am-3pm, if you so require. Getting through to the NAS advisors during the day can take several goes in a row for up to about half an hour or so, as the NAS is very very busy most of the time with calls.
You may be able to get the info-pack by e-mail, but as yet I do know if that is the case or how to go about or not.
No he has never been good at handling social situations, always looked at things in alot more complexity. He's always been brilliant at maths though, he can work out sums in his head extremely quickly.
We have always tried to include him in things we as a family do but he doesnt have the want to do it, sometimes he goes out at night just to go to the park and swing on the swings. Other times hes in bed all day.
It definiately is in my opinion a deterioration of the existing behaviour.
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
What was he like in the previous month's before the diagnosis?
Has there been a sudden change? Or is it a deterioration of existing behaviour?
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:
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:
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.
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
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.
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.
But that's good, isn't it, that he does engage with you, even if he finds it can get too much? It's like having had a big surgery and being able to walk across the room. It's not much compared to what you normally manage, but it's a lot given the circumstances. The sleep problems are also very typical for depression, all those things, not being able to sleep at night, sleeping during the day (not well though) and sleeping too much or too little. The pills may well do slow his mind, whether that's real or because he believes they will. But maybe one positive thing about that attempt is that he has taken them, so perhaps he also agrees to try something else. Common antidepressants aren't really supposed to slow your mind, which doesn't mean that they don't do it to him, but it's not something you just have to expect. I was very much against taking antidepressants myself, and what you are writing here convinces me even more that I had good reasons for it, but at the same time I think when nothing else helps or someone isn't able to engage enough in anything that may help then it is well worth trying. They asked me about all those things your son has (the sleep problems, eating problems, lack of motivation...) and I didn't have any of that, yet they insisted I should take them anyway, even though we all agreed that they were not going to solve the problem pulling me down. If the GP doesn't know about it you need to tell them about the autism. Hopefully they will send him to someone who's more specifically qualified to discuss what's best to try, and someone who is honest with him and takes him serious. Say if he does get antidepressants prescribed, then they need to be honest about common side effects because if they say don't worry, most people are perfectly find with them, and then he gets any side effect (which is likely but compared to how he is at the moment may actually be acceptable) then he will not trust them at all anymore (guess everybody would have that issue, but ASD seems to make it worse). And they need to believe him if he gets side effects that aren't mentioned in their books (they may just not be called like he experiences it) and give him a realistic idea after what time they should be gone or require trying something else. It seems some autistic people are very sensitive to medicine, so they should not ignore him even if they haven't heard it before. Guess you'll need to try and trust doctors and hopefully they will do the right thing or change plan if it turns out whatever they suggest isn't working.
This second paragraph you wrote suggests that what you wrote earlier, that he is unable to love people and doesn't care about things, that's not actually what he is like. It may be true at the moment but not generally, even if he does perhaps think of himself that way (maybe because others are better in expressing feelings, so he thinks he doesn't have them if he's not able to express them like that, or his own feelings are confusing to him, or he didn't really express very well what exactly he meant). Perhaps try to point these things out to him - supporting others that have suicidal thoughts, that sort of thing you wouldn't do if you generally don't care, and also that being depressed is causing such things but will go away when he feels better. And the hopelessness, well, again, that's a very common symptom of depression, not something you or anybody else need to feel guilty for. Try to have hope yourself that he gets better (probably not easy, maybe read a bit on this website: http://therecoveryletters.com/ ?) and generally read a bit about it, and try to tell him that you believe he will get better. The less he's able to believe in it himself the more he needs others to believe it (and show that, rather than arguing with him or reacting disappointed or something of that sort). Take it as a positive things that your other boys are doing o.k., it would be a lot worse if it pulled them down a lot too. It must be hard for your son to not get on with his brother anymore, but that's not the fault of either of them or you, it just happens and it may well change again. Being depressed won't help with that at the moment either because it makes irritable and so on.
Take care and be gentle to all of you (including yourself)!
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. 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.
He has seeked online help in the past and has helped others who have suicidle thoughts but the last few weeks he just seems to of given up on himself however much we try. Im going to ring the doctor tomorrow. Its hard because he has two younger brothers, him and my middle son dont really get on, i think its a clash of personalities but they were like best friends when they were little. I feel so guuilty when their laughing and joking together that Karl is feeling so down and hopeless..
Not sure if the doctor could fast-track this, but I'm also not sure it is necessarily needed right now. They may even decline to do it right now if he doesn't engage as it would be normal for him. But if someone has said he has autism of some kind then I guess ideally they get him a counsellor who has experience with this. And if he is too unwell to go there then they have to come to him, either at hospital or at home. When badly depressed eating behaviour is one of the things that change quite reliably - either not eating enough or too much or otherwise unhealthy, so that could well be a symptom of depression, especially if he has had this recently (well, sounds like it had not gone away in the meantime). They may think differently about medication now? I think it's quite good that they didn't just automatically put him on something, that's what they do to adults, but there may be a point where it could actually help to get him back to be able to see a counsellor, do activities (that will hopefully happen again, seems a bit odd for this support worker to simply not come anymore and nobody informs you why).
The stuff he says about being unable to love people and so on, maybe he means he doesn't feel the same others feel? Don't see it as complete cold-heartedness. Not caring about things is a symptom of ill mental health too, so try not to take this too personal (guess that's a lot easier said than done, but for now it will have to do). Some mental health nurse said to us once that someone who is depressed needs an extra-portion of love, and it needs to be genuine and unconditional, because when you are really depressed you don't necessarily behave in a way that others just want nothing more than loving you, and if you are autistic then this is probably even more true, but it doesn't mean you don't need it. He may not be able to give any love back at the moment, but that could be true for anybody with severe enough depression. Try reminding yourself that he's ill, not of a bad character.
Does he tolerate you being with him? If so (if he doesn't tell you to go away, I mean), then perhaps try to do that, try not to leave him alone most of the day. And even if he sends you away, don't give up on it, try again after a while.
We took him to hospital a few months ago as he was talking about suicide and he was extremely depressed. He was then sent to a centre where he had a councellor, they decided not to give him medication due to his age and that they wanted to get him out in group activities more. That failed as he is very socially awkward and his support worker stopped coming to badminton, something he was enjoying but we havent heard from her since. Would the doctor refer him to someone to find out where on the spectrum he is?
Primarily at the forefront im concerened with the amount of weight he is losing and wonder if he is becoming anorexic alondside this, alot of the time he just has no want to eat anything.
Hi Anna, I'm not qualified in any way, but what you are describing sounds like much more than "just" Asperger's. I mean, the autism is something he has had all the time, and he has not always been like now, otherwise he wouldn't have made it to 17. Depression for example is very common in people with Asperger's, that may be something to look into? More physical stuff perhaps needs to be ruled out too. The 3 weeks wait is for non-urgent things, if it's urgent you can get an appointment much sooner, the same or next day hopefully. You may need to be flexible and wait for them to call you when you can come, but you don't have to wait three weeks. Hopefully they will take his state serious, I mean, from what you describe it sounds pretty much so, you would need to have exaggerated an awful lot if they saw him and decided it's all fine. Please don't let waiting times put you off, or rather don't accept them. It's terrible that you have to call yourself an emergency nowadays in order to see a GP within a day or two, but do exactly that if they tell you there's nothing available any sooner than in three weeks. Do it soon, rather than waiting until Christmas when their capacity will be really stretched.