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anni
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26 Apr 2011, 7:37 pm

My son, John, is 19 years old and has autism. His Dad and I separated 6 years ago when he was 13. He is the second of 5 children, my oldest son and none of the other children have any disability. He was initially referred for assessment by a day care centre he spent a few days in while we were at a child-unfriendly point of renovating our house when he was 2 years old. I had put his behaviour issues down to him being a boy, in complete denial of him having a disability. He was extremely active, had tantrums which could only be soothed and settled by giving him a bath. I couldn't ignore his tantrums, because he would actually hurt himself. So the staff who looked after him at day care for those few days were concerned about his behaviour. I took him to the children's assessment centre and he was assessed by the head of the service who was a GP who specialised in children's mental health issues. It was in Tasmania, and that was as specialised as it got where we lived. After several appointments, the GP diagnosed my son as "eccentric"! Hmmm I wasn't upset by that diagnosis, since I was all for my children being individuals. Time passed, and he started school at a small catholic school. The first year of kindergarten, nothing was ever said about him, and I assumed he was doing well and everything was okay. After a few weeks at prep, his teacher approached me and suggested that he may have ADHD, which was the banner for most children who had trouble handling school in those days - early '90s. We were managing well with him at home, and had intuitively dealt with a lot of the behaviours, by using photos to communicate with him on all manner of things. He had an album which had photos of all the routine things he had to do in his day, and we would just point out the photos that were applicable when he needed to be redirected. The mornings were tough... he had trouble with the routines of the day, and I seemed to be repeating myself over and over again, and the photos meant that I could show him what he needed to do. It turned out that he has a real problem with auditory processing, so what we'd done intuitively with him is probably best practice! So we went back to the assessment centre with a referral from school, and after a multi-disciplinary team assessment, he was diagnosed with Asperger's syndrome. Nobody knew very much about Asperger's in those days, and primary school years were hard! He got some one on one aide time, which I think is the only time that he managed to learn anything. I agonised about taking him out of school and home schooling him, but I decided that he needed the social side of school more than what I could teach him one on one, since Asperger's is mainly a condition that effects one's social understanding. I became an advocate for him on many levels. He was well behaved, his manners were always complimented, but he had very few friends at school, spending most of his rec time with another child who also has asperger's syndrome, playing side by side in the sandpit. They are still lifelong friends, possibly because they understand each other.

At high school, he did poorly. We couldn't get funding for him to get any aide time, and I don't think he got very much out of high school at all. We had him tested privately to see if he could get funding under the gifted program, because there's absolutely no doubt that he's very smart, especially in science and maths. His written skills and verbal skills - the way he takes everything spoken very literally, brought his score down to just under what he needed to get into the gifted program, but he was well off the scale for logic and reasoning. When my marriage ended, we decided it was best for him to live with his father, as change was very difficult for him to deal with, and I was moving to Sydney. He wanted to stay with his father - that's probably the most important thing looking back on it. He went to College for year 11 and 12, as this is how the system works in Tasmania, and about 3 weeks before school finished at year 12, he dropped out of school. He sunk into a deep depression. I suspect partially because up until this point in life, he had a very predictable way of life - he knew what he'd be doing the next day, the next week, and the next year. I intervened, moved him here to live with me, and we started the rounds of doctors and specialists to try to help him. Absolutely nothing worked. He trialled several medications with no positive effects, he rarely dressed or showered. He talked about suicide and how there wasn't any point to anything. I could not help him. He stayed here for 8 months, never leaving the house without me, and then only really to attend appointments that i'd set up for him. Eventually he started being "non-compliant", even when it came to stuff like going to Centrelink to put his certificate in. It was no life for him here, he was too scared to go past the front door, and refused to be a part of any positive planning for his life. He refused to go to school, or even try to sleep regular hours - he had developed a pattern of sleeping all day and being awake all night - which is not that unusual for him. He was always up by 3am his whole life long. He was no happier here than in Tasmania, and it's just me here, while in Tasmania there's all of his siblings and extended family, who are very supportive of him.

So he went back to Tasmania - he didn't care where he was, and things were getting very tense here, due to one thing and another. I went down shortly after he returned to Tasmania, to deal with Centrelink, hook him up with a counsellor and GP. We were extremely fortunate to find a specialist in the autism spectrum to work with him. After his first session with John, he told us that John has high functioning autism, and not Asperger's as we'd been told much earlier in his life. (Mainly because he was 6 when he started talking, and people with Asperger's don't normally have delayed speech or other delays in their developmental milestones) He has been declined a disability support pension, and has been without any sort of income for a year. He rarely dresses, doesn't look after himself properly, has gained a LOT of weight, and refuses medication or intervention. Yet, he's not psychotic nor does he have any sort of mental health issue that would enable him to be confined and treated without his consent. He slips through all the cracks, basically. I'm scared for him every day. It's a situation where I think I've really done everything I can do, and I failed.

When I intervened, John was already 18 and an adult. His father and I can't force him to do anything he doesn't want to do, including getting the support that he obviously needs. I have done some reading about late adolescence and autism, and his reactions to the end of school don't appear to be uncommon anecdotally, and so as a family, we just hope that in time, he will find his own answers and his own path in life. He has been offered everything we can think of, including a year overseas with my family in Norway, but he has no interest, and I, in all good conscience, don't feel like he should go away while he's in the state he's in. He's had various trials of medication throughout his life, but absolutely none of them seem to do him any good, despite extended attempts. Ritalin and Dexamphetamine were tried early in his life, and again prescribed by the psychiatrist he was seeing while here in Sydney, but on both occasions, the effects on his mental health were so negative that with those types of drugs, we only gave them a week. The psychiatrist assured us that if they didn't work immediately, they probably weren't going to work. He has had every modern type of antidepressant with no positive effect, and one of them caused him terrible side effects on the lowest clinically effective dose. He's even trialled anti-psychotics just to try to help him sleep better at night, but to no effect. You know, as a parent, you agonise over that decision that you're going to trial a child on medication, but when they don't work, and they're what you see as your last resort, it's a very cruel thing. It's extremely frustrating to see my son, who's so bright and could do so much with his life, just watching his life pass by and being so miserable most of the time. I'm not looking for advice or solutions - i think I've explored most of them. I just thought if we're having this experience, there's probably other people out there, doing it tough, and just wanted to share so perhaps someone feels a little less isolated. :)



Louise18
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26 Apr 2011, 8:11 pm

Hi there. Just thought I'd poke my nose in to say depression is sadly very common among asd people, and I have suffered from it extensively myself. Is there anything he is interested in at all? Does he have any goals in life?



anni
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26 Apr 2011, 8:29 pm

Hi Louise... While he was here in Sydney, we got involved in archery, and his dad is doing this with him in Tasmania now. Other than computer/console games, which bore him very quickly, that's pretty much his only interest. He can't identify any goals at all. He has some really odd ideas about how life should be, including that one should only do what one wants to do in life, and we shouldn't have to pay for anything. If we want it, we should just take it. I have tried to talk through the consequences of living that way, but we either hit the wall and feels hurt and angry that I don't agree or put roadblocks (reality in my opinion) up. I guess he sees it as me having a problem for everyone of his solutions. I told him he should follow his dream, but the way to go about this is to finish school and go on to further study. Nobody is going to be listening to the views of a 19 year old unemployed, uneducated young man. Don't get me wrong.. it sounds as if I am very critical of him, which I'm not. I accept him for the person he is and love him dearly. It's when his reality and his view of the world veers so off course, coupled with the fact that he does not communicate with many people, that I feel I have to be the person who is constant, predictable and reliable. I feel he wouldn't share these deep thoughts with me if he didn't trust me.
After months of actively talking about suicide nearly every day, one day I got so exasperated, I gently asked him if he thought about suicide so much of the time, why is it that we still have him with us. (I know.. this sounds terrible, but it is terrible to live day in, day out with a very depressed, lethargic, inactive, negative person) He answered me, very matter of factly "Well, Mum, I want to give you the opportunity to prove to me that life is worthwhile and worth hanging around for". I started to cry, because I just know that nobody can convince another person of this, it's something you have to find for yourself. I told him the things of worth for me in my life were my family and other loved ones, my friends, the every now and then great moments of joy, the bond I have with my partner.. but that's not the same for him, and people are really quite unimportant to him. I really believe and have hope for and in the future. This too shall pass! I needed help myself to deal with all of this, and actually had a few appointments with John's psychiatrist and I'm very lucky to have a brilliant and supportive GP.

I asked him that if he were given God-like powers to do and be whatever he wanted, what would he choose, and he couldn't think of a single thing he'd do or want. You know, I get some hope from people I've spoken to who are adults with Asperger's, who can completely relate to John's experience, who are currently living "successful" lives with relationships and careers. I want to continue to be supportive without being an enabler.. it's a fine line sometimes.



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26 Apr 2011, 8:38 pm

Has he had much exposure to the outdoors? Hiking, camping, mountain biking? When you are out in the back country, life pretty much is, "take what you need." Get close to the earth, grow it. Connect to it. I'm wondering if that sort of concept would appeal to him. I know my son (only 13) absolutely loves being in back country. It is when he feels most centered, alive, connected, peaceful, and happy. If that sort of connection exists for your son, then you can look to how to turn that into a life.


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psychohist
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26 Apr 2011, 11:02 pm

anni wrote:
Hi Louise... While he was here in Sydney, we got involved in archery, and his dad is doing this with him in Tasmania now. Other than computer/console games, which bore him very quickly, that's pretty much his only interest.

Focusing on his interests might be good, at least until he can pull out of the depths of depression. Do online games bore him too? If he hasn't tried them, an online game like World of Warcraft might be a good place to try out the "take what you want" philosophy - maybe even a PVP server or a PVP game like Lineage 2 or Warhammer Online. Normally I wouldn't recommend that as online games can be even more overly addictive to aspies as to anyone else, but it sounds like a game addiction might actually be an improvement over his current lack of interest in life.

Since he's gained weight recently, he should be checked for prediabetes/metabolic syndrome/whatever term Australians use. Other contributing causes to depression are insufficient vitamin D and insufficient omega 3 essential fatty acids, so getting enough sun and a vitamin D supplement might be good, as would some foods that are rich in DHA or other omega 3s.

What happened to his friend?



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26 Apr 2011, 11:27 pm

I was going to say, that you had to communicate to him with pictures sounds more like HFA.

I'm not sure that I can offer much advice because I have AS rather than HFA and I'm not convinced our minds work quite the same way despite the external similarities.

I know he's depressed but the medications likely have a low success rate because they are geared towards biologically based depression, and while your son may be severely depressed, he might be so for external reasons.

It might be that he realizes that he's up against a lot in life and possibly has come to the conclusion that he just can't compete in the real world. Have you talked to him and asked him exactly what the problem is?



anni
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27 Apr 2011, 2:39 am

Hi Chronos! The label unfortunately doesn't change a lot in any respect. The photos were more about keeping him on track and being able to redirect without losing patience with him. You ask a child to do something only so many times before you either do it yourself, or you get crabby that you're being ignored. I didn't want to have crabby mornings any more, and the photos helped a lot because he could take in so much better stuff he saw than stuff he heard. I had to break down everything into 1 step instructions. I could not say something like "oh, you've finished your breakfast, go and brush your teeth and wash your face and hands and get dressed". Information overload! He would hear "Oh you've finished your breakfast" and head towards the loungeroom to turn on the television. He wasn't naughty, or willful, he just couldn't process that much information at once. We also did star charts and time out and all the usual things that parents did in my era of parenting. I have asked him time and time again what the problem is, and I've even offered possibilities, such as is it because Dad and I broke up? Is it because you were getting bullied? He has given several reasons for leaving school. The first was that he couldn't get motivated to get up in the mornings and go, another was that he felt he didn't need to go to school anymore because he planned to get a job, and another was that he couldn't deal with catching the bus to school. When he lived in Sydney with me, he said he gained some insight into how being on the spectrum could be described. Sydney is a very multicultural city, and he said having asperger's(which at that point was what he was still diagnosed with) was like coming from a different country and trying to fit in when you weren't sure what the rules were. He has very clearly a pronounced social anxiety.

Hi psychohist! He's been through most of the online gaming, including some text based games which are easier for him to focus on, but he's just bored with everyone. He has an interest in archery, and his dad takes him and participates with him once a week. He had every medical test imaginable when he was here in Sydney, and everything is well within normal limits, so there's nothing going on healthwise, although that could have changed in the last year, and he now refuses to go to the Doctor at all.

Hi DW_a_mom! If only he was. We head out of the city as often as we can, but while he was here, he refused to come along, so we didn't go. I didn't feel he should be left alone overnight. I actually had a friend come and stay with him when we had to go interstate for a function one weekend. His friend is still in his life, on the periphery, but he's getting on with his life and is studying science at university. His small group of friends are either working or going to university now. It's hard to maintain friendships when you have no money to go out with, and you live at home with your Dad. Young adults don't tend to want to stay home, and John's friends are no exception to this. I think he was invited to things to begin with, but the invites dropped off because he always declined them.

I'm really hoping that time will take care of things, because at his age, we can't push too much, and don't want to push too much, because he can so easily refuse, and he's quite stubborn when he makes up his mind about something. We don't want to push him away - he's very naive about the dangers in society, and he seems to have the idea he could survive in the world without a job and on his own. Questions like "where would you sleep and how would you eat" are shrugged off. "you might get hurt!" is met with "so what? I don't care." He's never had any contact with the police, and I don't want that to change. I worry that if he did leave home, he might get into trouble, either by meeting people who are trouble and getting involved with them or committing petty crime to feed himself through shoplifting. I don't know at what point we let go and do the "sink or swim" thing.. it certainly isn't any time soon.



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27 Apr 2011, 3:21 am

Hi anni, it definitely sounds like Major (severe) depression to me. Has he ever been on anti-depressants? If he hasn't then I would definitely recommend trialing them.

I personally suffer from cyclic major depression, and when I have major depression my life pretty much stops - I lose all interest and motivation in everything, drop out of everything I'm doing, and basically think about suicide all the time. It's normal for me for this to last months. Unexplained weight gain/loss and irregular sleeping patterns are also symptoms of major depression. Taking anti-depressants has helped pull me out of severe depressive states before, but it normally takes at least 2 weeks or more of taking the pills before the effect kicks in.

You say he is non-responsive and resistant to going to the doctor or doing anything. I am the exact same way when I'm having depression - I resist getting help, resist doing anything (don't want to do anything), feel like my life is over/not worth living, and become difficult to deal with.

It seems strange to me that with the history you have described nobody has ever diagnosed him with depression/he hasn't taken antidepressants? To me it reads like casebook depression. I am also a psychology student and have some understanding of the diagnostic criteria and symptoms for depression (although I am obviously not a qualified professional).


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anni
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27 Apr 2011, 3:49 am

Hi sunshower! I may have been unclear, but yes, he has definitely been on treatment for depression, and diagnosed as having major depression. He has trialled many antidepressants, one of which caused him physical side effects so we stopped it rather quickly, but the others he was taking for months before we deemed them ineffective at best, and at worst they seemed to make him feel even more depressed. He saw the GP once a week, who used a depression scale to gauge whether he was better/worse/same. We really did try everything we could think of, until he decided some months ago that he didn't believe in doctors and he wouldn't be going to see one any more. Not much we can do about that at his age. He's very aware of his rights and reminds us regularly that he's an adult and he can make his own choices. We've been working on this with him for nearly 2 years now. We can't take take privileges away from him, we can't ground him, and we definitely won't threaten him that he'll have to leave home if he doesn't comply. We try to reason with him gently, praise even the slightest hint of progress "well done mate, you had a shower this week.. you smell so good!" He's had contracts with counsellors attempting to change just a small thing a little bit, but he does not seem to need or want to please anyone, or get any sort of external rewards. As well as that, the rest of the family provide him with good role modelling, as we have put in a tremendous effort to ensure that John is not the centre of attention, 100% of the time. We have always picked our battles, there's no point in sweating the small stuff.

As an aside, I have worked in the disability sector for the last 5 years, in day programs and in respite care. Mostly I've worked with people who have profound intellectual disabilities, some also with physical or medical issues as well. You know, I can't help but feel helpless when I've been successful in getting other people's children to start communicating where they had no speech previously, and getting adults to the point where they are free from the need for incontinence pads, but for my own child - I just can't seem to do the right thing, or find an approach which will work. I'm not giving up, but I'm sitting back for a while and see what happens without intense intervention. He seems to be no better or worse off from this period of "benign neglect" if you like (not pushing him to wash or change his clothes, etc).



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27 Apr 2011, 4:09 am

Hi Anni, I'm sorry to hear that they were ineffective. I think most anti-depressants only have around a 50% success rate. Sorry, yes I don't think you mentioned depression in your other posts (which surprised me).

I wish I could be of more help to you but after reading everything you have written I am also at a loss. I think probably the best thing to do would be to keep going as you have; trying different approaches and if they don't work moving on to other approaches. I think getting as much outside help as possible would be a good idea too, especially as the problem is so serious. I also think you shouldn't blame yourself or feel inadequate because of your sons current condition, it sounds to me like you've been a model parent and done everything you possibly could have done - I don't see how anyone in your situation could have done more.


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