The autism rears it's ugly head at get together last night

Discussion in 'General Parenting' started by MidwestMom, Jul 5, 2009.

  1. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Well, we had a surprise invite for July 4th at an old friend's house. We adore them and so do my kids. We decided to bring L. with us, even though he tries to get out of going to get togethers. He knows this family and we figured he'd feel at home.

    He didn't. They had a family from across the street and two sets of parents there and their teen age daughter had three kids there. We were all out in the yard sitting around a table with lawn chairs, but L. sat way in the back, on the edge of the lawn and stared at the ground. He was polite when spoken to, which wasn't often because of where he was sitting and also his closed down demeanor. He didn't speak to anyone on his own. He passed on dinner. On a maybe positive note, he did not jump or cover his ears when people threw fire crackers--he has learned not to do that. But I was a little disappointed that he acted so autistic in this setting. At home and at school, with the kids he is used to, he is like a different person. He also pulls top grades in school, but, boy, he's going to have problems working with others unless we do get him assistance (which we will).

    Seeing him in this setting was helpful though. It re-enforced to me that he IS a spectrum child, Aspergers or whatever, and he will continue to need help as he goes along. In the end, because he was obviously so uncomfortable, I drove him home then came back. I was glad too. It was very noisy later on as the family shot it's own fireworks and the younger kids were raising Cain :)

    However, it is clear to me that L. is not going to be one of the % of spectrum kids who goes on to live an almost "normal" life. And that's ok, but it's just so surprising to see him this way when he is so different at home and with familiar people!

    Just a vent. Have a nice day, everyone :D
  2. crazymama30

    crazymama30 Active Member

    It is hard when things happen to make us realize how different our kids are. We can accept it but it is still hard.
  3. susiestar

    susiestar Roll With It

    I am glad he is not so closed down when he is in a familiar situation. There are probably many jobs he could handle once he settled in to them.

    It stinks when situations like this remind us our kids are "different". I am glad you took him home and then went back. It is good for him to be exposed to new things, but if he stays long it may be too much.

    I am glad you went and had fun!
  4. Marguerite

    Marguerite Active Member

    They can improve from here. difficult child 1 was like this. He's not now!

    There were multiple problems with this for L.

    1) It was a snap deicion to go, he did not get the chance to prepare himselfmentally to be around other people. But hey, they're friends, he probably though, "I'll be OK, I know these people."

    2) But other people arrived. Strangers. And lots of them.

    3) There was a lot more noise, a lot more activity and then fireworks.

    All at zero notice, all with no preparation, all with no escape "safe area" anywhere. If he didn't actually melt down and have a tantrum, he deserves praise. It means he held things together a lot better than I think you realise. He just needed some of his more obvious coping strategies to make it possible.

    For future reference - you can do this sort of thing again and you probably should, but when you do go somewhere like this, plan ahead (as best as you can) and with the host's connivance, find a 'safe place' for him to go to, then as soon as you arrive take him there. Depending on how you can trust him the safe place could be the host's bedroom, or a guest room (not where coats & bags are being put). A basement, an attic. A cadboard box somewhere. The laundry is often good.

    By taking him home you showed him that you respected his discomfort and supported him, although you also showed him that it's not acceptable behaviour either.

    YOu did good all round. You took risks of course, but we need to do that occasionally with our spectrum kids. They do need to be off balance from time to time because we ALL need that. But it needs to be within our capabilities. And finding out what his capabilities are, is tricky.

    The best we can do is the best we can. Can't do more than that.

  5. barneysmom

    barneysmom Member

    Hi Midwest Mom,

    My husband is AS and he acts like this at parties sometimes too. He is fully functional and has a good job in business -- his job involves few people in real life and a lot of emailing and IM'ing, which he's very good at socially.

    I agree that your son didn't have much notice, and held himself together pretty well. I think with his good grades and ability to make friends over time as he does now in school and familiar places, he'll do great.

    You are awesome that you drove him home after awhile. That was merciful, and a good teaching experience that he can try to go somewhere, and leave if the stress is too much, and not have to try to be someone he isn't. That's a good lesson for any kid.

    Jo xxoo
  6. susiestar

    susiestar Roll With It


    Marg is right. If he didn't actually have a meltdown, he did great! Keep taking him places he is unfamiliar with. If you only take him to places that are familiar, he will NEVER get any more comfortable in unfamiliar places. It will be a true "clipping his wings".

    We knew Wiz could be uncomfortable in unfamiliar places. I always made sure I had a protein rich snack with me, and some pretzels or animal crackers. Knowing he had "safe" food to eat in case wherever we went didn't have food he liked made a HUGE difference. It took me a while to figure it out, but I did. So once the balance bars with decent amounts of protein came out we would stop and get those if I didn't have a snack handy to take. So he knew we could ALWAYS stop at a WalGreens or WalMart for "his" food.

    I took him LOTS of places because I wanted him to be comfortable in LOTS of places. Street fairs, like Taste of Wherever and Oktoberfest celebrations, are excellent places. It takes budgeting, but is well worth it. Find the portapotties as soon as you get there, point out that you have "his" safe food, and that you will go in 30 minutes (Or however long you decide), and get him engaged in an activity - either something provided at one of the booths, choosing a good booth for a snack, or with a map of the event he can plan a place that HE would like to go.

    At first he will be miserable. You might not even be able to stay for 15 minutes. Don't get upset when you have to take him home. You will. Just be prepared. Do whatever YOU want to do when you can squeeze it in. Remember the outing is to help him become comfortable in unfamiliar places. Remember that he is NOT faking it, he is truly uncomfortable and working very hard to keep it together. If you go to a mall and actually need something, go there AFTER you show him the snacks you brought and the restrooms. Either in one of the anchor stores or in the mall itself. Also point out the map - he can help figure Occupational Therapist (OT) how to get wherever. It is GOOD for him to get involved.

    After a while he will be more and more comfortable EVERYWHERE. This greatly increases his potential financial situation - he will be able to earn a decent living simply because YOU taught him how to handle himself in unfamiliar places. He may never "'fit in" as easily as your daughter, but he WILL become able to cope.

    Try to ENJOY the outings with him simply because you are with him and your other kids. Make it not so much about doing something specific as much as enjoying being together somewhere new.

    It also may be helpful to include bookstores like Borders and Barnes and Noble. They are usually quiet, they have comfy chairs, they have the cafe (water is free) and clean bathrooms. And they are ALL pretty much the same. It would give him a sort of "oasis" that you could take him to in order to regroup if you must stay in an unfamiliar area. THis helped us immensely with ALL the kids. They would settle down in a bookstore because it had interesting things and comfortable chairs. Let him sit and look at a book or even a comic. Maybe a Garfield book? They truly do not expect people to buy every trip (I know, I worked in one!). And they have the comfy chairs so you will sit and read there.

    I hope you can get to a point where he enjoys the adventure of an outing.

    Providing a safe escape to the car is also important, I forgot to mention that. If you are in a mall, find a store he really likes. For us it is the bookstore. Make sure he knows that you will stop there and give him some time to regroup. Or that you will leave when it gets too much to bear.

    Good Luck!!
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi, all. Thanks for the feedback.

    L. never has meltdowns. Ever. So I knew he'd hold together. Secondly, unfortunately going into the house wasn't an option. He will usually come alive if he can go inside and play That loosens him up, but the host wanted everyone to stay outside. L. did have his PS with him (the little one) so he had permission to play that after a while to take his mind off the noise and the strangers. He is like this even with our family though if everyone is there. He also gets bored easily. All in all, right from the start I was hoping he could stay, but ready to drive him home after a while if he seemed uncomfortable.

    As I was watching him (he was on my mind until he left), I was laughing inside in a way. This chld had been diagnosed with ADHD/ODD (the ODD part is a riot) and bipolar disorder! And here was he was with NO DOUBT that he was on the spectrum. Honestly, these doctors were so "off" with him. He is just so obviously a spectrum kid! Well, at least we FINALLY got THAT right so he can continue to get the right kind of help.

    Thanks for "listening." :tongue:
  8. busywend

    busywend Well-Known Member Staff Member

    A reminder, yes. But, glad it was helpful to have the reminder. Sometimes we get so used to them in the home environment it is shocking to see them out of their element.
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Oh, Busywend, so true. Worse than that, he is very comfortable at school too! If I told the educators about this, I'm not sure they'd believe me. And I need their support to help plan for his adulthood.

    Sigh. It's never easy. :anxious:
  10. Marguerite

    Marguerite Active Member

    Just a thought on adults on the spectrum - a friend of ours (we're fairly sure he's Aspie) split up with his wife (also a good friend of ours). He was miserable for months, still at his wife's beck and call for free babysitting. She got the house, she got the kids, she registered for child support (state paid) but still got maintenance from her husband, plus the free babysitting. She was working part-time and getting her husband to come to their home (which she now shared with her new boyfriend) to mind the kids free of charge while sheearned money under the table. She also registered for childcare subsidy - I was disgusted with her. All the subsidies she claimed and she used her ex to babysit so he could have access on those days.

    But I digress - he saw his kids several times a week, he worked weird shifts (his choice, it kept him away from people). But he was lonely, even though he avoided people. He worked with computers, he was very much in demand as a trouble-shooter.

    Christmas came. His ex had decided to go for a holiday with the kids and new partner, He didn't want to be on his own, but didn;'t want to be sociable. So he rang us - could he come and visit but would we leave him alone and just shove food at him now and then? He didn't want to be any trouble...

    So he came to stay for a week. He brought his computer (this was pre-laptop days, he brought a big crate into the house and took over the dining table). And he spent much of his time on the computer, keying stuff in and generally being on his own but in the midst of whatever we had going on. We had our (very young and only three) kids in the house, friends dropped in from time to time and still our friend sat at the dining table, tuned out but still with people around so he didn't feel too lonely. We just lived our lives around him and shoved food at him at mealtimes.

    He came through it. It took quite some time, but I'd like to think we were part of the process.

    This isn't what I would recommend for most people, but for our friend, it was clearly exactly what he needed. By being around our family he had a sense of normality imposed on him but he didn't have to interact except when he was ready.

    I'm convinced he's Aspie. He trained as a teacher but failed miserably at it, got thrown out because he just couldn't cope with working on a team and also working with kids. So he got into IT on the ground floor and was brilliant at it. After a few years (and after his divorce) he got into the habit of working long night shifts (of whenever he wanted to) for six months, then travelling the world for six months simply because he had amassed so much money. Then he would come home and go back to work. About ten years later his wife couldn't cope with their youngest child so she was packed off to live with Daddy, who clearly understood her better. By this time he had remarried - a woman who seems to cope with his quiet times much better than his first wife ever did.

    There is always hope for our Aspies. difficult child 1 is married (although I still worry about him, he and daughter in law still have a lot of growing up to do). They are slower to 'get there' but will continue to develop even after other kids their age are living independently and fully functioning.

    I look back through my family and I can see unvcles who were odd, probably Aspie. One uncle was a diagnosed epileptic; his immaturity was ascribed to the epilepsy. I adored tis uncle because he had a childlike capacity for joy; he was 80 and stayed with us by the beach and wanted to learn to body-surf so borrowed my boogie board. It was like watching a rat trying to drown itself, but he kept dragging himself out of the surf, grabbing the board and heading back in to catch another wave (or get dumped). He would get obsessed with a hobby and follow it for years, becoming incredibly good at it, unbelievably so. He was an artist who specialised in a particularly unusual medium - Australian native plants. Not painting them, but painting WITH them. He won shows, exhibited around the country. His son was a national expert on native plants and has written a lot of books on the topic. But his son always worried about his dad and felt he needed to be looked after. The touch of genius that you get in families of spectrum people was definitely there in the son. And in cousins. The family musical genius was another cousin on the same side of the family.

    They functioned. My uncle was married for over 50 years until his wife died. She harried him a lot but he was intensely loyal to her. He seemed to become odder after she died, as if she had held him in check a great deal.
    My genius (probable Aspie) cousin was married but to a very odd woman who he later divorced. He needed a carer, basically. As a kid his father chaperoned him and supervised his career - a lot like David Helfgott but not quite so obviously odd.

    Our kids do need carers in their lives, but the extent varies and often a carer can be disguised as a lfe partner.

    It is our ambition as parents, to see our kids grow up to be happy, functioning, productive and independent. Everything we do is heading them in that direction. We can do it. So can they. But they may always need a little bit of help.

    Read Temple Grandin's books. As a child she was even more obviously autistic than difficult child 3 (which is saying something). But look how far she has come! She gives me hope.

  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Thanks, Marg.
    I'm sure L. will always need a little bit of help, and that's ok. It was just so shocking to see him being fully autistic because to us he doesn't seem that way at all and in school he is very comfortable. I think the key for L. will be to get him a job where he gets to know people and is comfortable and "watched." These kids are smart (my son is #11 in grades out of 130 kids), but he can't perform up to his IQ due to his other deficits.

    You are so right that being with somebody is different for L!!! He likes to be with us, even when he doesn't He is so solitary that the thought of a girlfriend or marriage is very much NOT in his plans. He wants a BIG And that's fine! You sure have Aspies nailed!
  12. susiestar

    susiestar Roll With It

    It is AWESOME that he is SO comfortable even at school that a lot of his autistic traits do not show. How is he on school field trips? What if you do not go on the field trips? Do the adults then see his more autistic traits?

    It is a big relief when you finally get the right answer to the puzzle our kids present to us. The other diagnosis's are laughable, I agree. Research has been done to show that if a "normal" person - one with no mental illness who is neurotypical - checks in to a psychiatric hospital, all the docs and nurses and staff will point out the behavior that enforces the diagnosis that is in their mind. Even if the person acts totally normally, they will STILL point things out to prove the diagnosis they have in mind. Even if someone else on staff has a differen diagnosis in mind - they each find ways to "prove" that the person is mentally ill or not neurologically typical!

    So it isn't a big shocker that the docs all saw what they wanted to see. You did too, for a while, with each different diagnosis. But YOU were able to follow your mommy instincts to find the REAL problem and teach him how to cope.

    It is still good to take him out of his comfort zone on a regular basis. It teaches him how to cope.

    Just make sure you always have at least a mental escape, if you can't have a physical one.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi, Sus.
    Ah, the day we got L. I said, "He sure acts autistic, doesn't he?" but nobody listened to me so I started to think I was wrong. Grrrrrrrrrrr. I understand why they said Bipolar. Autism Spectrum Disorders (ASD) kids are very quirky and can be mistaken for mentally ill, but L. is one of those spectrum kids who obviously is just spectrum, with nothing else going on. It's baffling that they got bipolar out of it. He never rages. He's not outwardly moody. He never tries to harm himself or others. He sort of did as a toddler, but not since getting interventions. He does worry and have high anxiety, but that's part and parcel of the spectrum as is attentional disorders.

    Susie, L. can do anything other kids do at school. He would die of embarassment if I went on a field trip with him. In fact, he's mad because, due to cutbacks, they have stopped most of their cool field trips. L. participates in Special Olympics, a better fit for him than school sports because he doesn't always "get" the rules and is not quick enough for team sports, except for soccer, in which he is very good. A girl asked him to prom and he went. HE DIDN'T WANT TO we made him and he had fun. The girl has been his best friend since grade school and he really enjoyed the waterpark that all the kids were bussed to after the agony of being forced to dance with her. But he did tell me she's not his girlfriend because girlfriends are too much trouble--they are just friends and she happens to be a girl. He doesn't require me to do anything with him regarding school. If he needs help at school, he will ask for it. He will bike to stores himself and ask for help if he needs it. It is when he has to sit around and socialize with new people that he drops his head or hides out or begs me to take him home. He has other quirks too, none of them harmful, all of them something me and N. and hub kind of giggle about--affectionately. He talks to himself in his room (actually he is talking to his game system and to the television shows). When asked about it, he said, "Nobody else is there, so I talk to ME." Then he also said "I understand things when I say them out loud. It's easier." He also obsesses over things in a sometimes obnoxious way and he admits he can't get things out of his head once they're in them.
    If you look "spectrum" up in the dictionary, you see his face on it!
  14. Marguerite

    Marguerite Active Member

    I get really annoyed with the way some kids get so badly mislabelled so easily. We tend to NOT get bipolar as a diagnosis for kids in Australia (even when they should) but difficult child 1 was given a diagnosis of ADHD at age 6 (when I had already been asking for years for help, there was something wrong) and it took until he was 14 to get the Asperger's label. And even then it was so difficult to asses, because most of the tests are not deisgned for older kids; they have adapted too much by then and can fudge their way through the tests and unwittingly compensate. It takes a really special analysis looking at subtleties in sub-scores to recognise it.

    I think the most telling moment for us in difficult child 1's assessment at a multidisciplinary clinic, was wwhen they asked him to write something for them. "We want to see how well you can write," they said. "So please write something for us. It can be a story, it can be anything." They gave him a pen and paper and left him to it.
    But their instructions were NOT specific. They should have said, "We want to see how well you can create a piece of writing. Please write something original for us, made up now on the spot."
    Whereas he thought they wanted to assess his handwriting! So he wrote (from memory) the chapter of the book he had been reading just before the test.
    When I discovered this (he hadn't intended to be deceptive; I happened to pick up his book a couple of days later and read the same words in his test, and asked him about it) I rang the clinic to tell them. THEY DID NOT MODIFY THEIR diagnosis (which was "He writes too creatively to be Asperger's.")

    I had also asked them to assess his short-term memory issues. They did this by reading him a series of digits (I believe this is called 'digit span'). But they read the numbers very slowly, a second between each digit. So a 7 digit sequence took over 7 seconds to read out. There would be a long pause and difficult child 1 eould recite the sequence back. But the trouble was, difficult child 1 was able to use his long-term memory to 'record' the sigit span, so it wasn't the test we needed.
    About six months later we were talking about the assessment process and difficult child 1 piped up with, "Why did t hey try that number sequence thing to test my memory? If they had asked me for the digits in reverse order I would have got a better score. Last on, first off is easier. See?" And he recited the number sequences again, still in his memory.

    So much for SHORT term memory.

    I ang the clinic again. They said they would not revisit the diagnosis, they stood by their testing and there would be no purpose gained in them re-testing difficult child 1. I reminded them of the writing test glitch - they wouldn't budge.

    They had done the same thing with difficult child 3 (who had been tested by them a year earlier than difficult child 1). They had said to us, "We will need to see him again in a year, we will call you with an appointment closer to the time." A year came, I hadn't heard form them. I rang them and they said, "We've decided to not re-test him. We stand by the original diagnosis, there is no reason to change."
    I said, "He was non-verbal when you tested him with a verbal quiz, to which he was unable to respond. He is now more verbal, I think you would see a great difference."
    Nope. Not interested.

    I still think it's ridiculous to score a kid's IQ on the basis of a test where someone he doesn't know is sitting there talking at him, when he doesn't have age-equivalent receptive language unless it's written down. If they had given that 4 year old a written test (same questions) they would have got compliance. But his lack of compliance was read as inability, meaning "borderline" (I'm assuming "borderline retarded" although they carefully didn't use the "R" word).

    It's quite common for spectrum kids to be non-compliant with testing, or difficult to test for all sorts of reasons. The distractibilaty factor is one.

    I remember when difficult child 1 was first being tested. The school counsellor assessed him in my absence without my permission or knowledge; she reported that he was unable to complete the test because he was fidgetting too much and wouldn't sit still. difficult child 1 used to fidget a lot the more anxious he was. But when I had him one-on-one at the local Community Health Clinic psychologist for much more careful assessment, I was there observing. Partway through the test difficult child 1 said, "I'm bored with this. I don't want to answer any more questions. Let's talk about birds instead." (Birds were his current obsession - still are). The psychologist was able to bring him back on task, we explained that it was important for him to do the test. But to do this he had to 'stop the clock' while we talked to difficult child 1 and explained. A lot of psychologisgts working by the book would not have stopped the clock and would instead have marked the point where time was up, even if the intervening time was not all spent on doing the test.

    These tests are inexact. The original IQ tests were not developed as diagnostics, not in the way they are being used. Originally they were used to map the spectrum of normality. If you have ever studied statistics you will understand things like normal error, standard deviation, too many variables.
    No key is better than its original parameters. In other words - the original group that was assessed to develop these tests is the only group for which the tests can ever be relevant. And the original tests were given to kids in school, 'normal' kids. The sort of kids who would not have been in those classes - the difficult kids, the weird kids, the 'retarded' or otherwise too-different kids, simply were not in the test group. Other kids not in the original test group are kids for whom English is not their first language. Tests have been translated but you need to translate more than the language. Technically the tests don't even apply to Aussie kids, except that there are tests now which have been fully adapted for (allegedly).

    For example, a test which requires the subject to spell would mark an Aussie kid wrong for words like "humour", labour". "favourite" and so on. "What month does Winter begin?" would also get the wrong answer in Australia. US testing would have questions which would give wrong answers in Australia and vice versa.

    I got tested a lot when I was a kid. I suspect it was due to a combination of things - I was considered to be exceptionally bright but I was failing to achieve to my expected standard (in my opinion this was either due to the tests picking up some aspects of my early reading and hence my absorption of more information as facts than my brain was actually taking on board as knowledge; or my extreme anxiety due to ongling bullying and pressure to achieve in direct conflict). I was also considered to be depressed. Not surprising, really. And yes, I'm probably a carrier Aspie, it does run (gallop) on both sides of the family but especially on my father's side.
    But I remember the tests being given to me, I remember trying to answer some of the questions and asking for help when they didn't make sense. I was told to ignore those - it was because the test was skewed to white US, I was told. Seriously. Plus I was donig a test designed for adults so questions on how much I smoked, what my alcohol intake was and my libido (that was one word I didn't know at the time!) I was told to leave as N/A. I didn't think much for the chances of any valid information coming out of that test!

    Since the original testing when thew whole concept was developed, a lot more work has been done to develop tests which can give more useful information. But the original premises remain - these are all based on the earliest testing, which was based on a narrow group of "normal" white US kids. And there is always the tendency (the occurrence) of testers pushing the tests to the limits and beyond, to glean as much information as they can from the results. But they generally go too far and read significance into what is more likely "noise".

    It's like the first discoveries of quasars in astronomy, those massive radio beacons sending out rhythmic, strong radio pulses at regular intervals. People tought intially that quasars were the output of intelligent life, when in fact they are simply vast balls of plasma revolving at high speed around one another and thereby pulsing out electromagnetic radiation.

    Testing is useful. Just be cautious about what you read into it. And be extra cautious about what an "expert" tries to read into it. Always keep an open mind. For example, I know I'm not anywhere near as intelligent as I was originally thought to be. That still leaves a lot of room for some smarts, mind you!

    Last edited: Jul 6, 2009
  15. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I about busted a gut laughing about the "show us how well you write." Even before you told me the outcome, I though of L. and thought that he would just write maybe his name to show them how he could write :D. They're all so different and they're all so the same and they are very concrete and it is MADDENING how they will give kids every label under the sun even when Autism Spectrum Disorders (ASD) is staring at them.
    Part of that int he US is that in my opinion most psychiatrists don't "get" Autism Spectrum Disorders (ASD), and when our kids are behaviorally different we tend to take them to mental health professionals who aren't looking for or who don't even understand Autism Spectrum Disorders (ASD). Thus we get "he's ADHD" "he's bipolar" "he's ABCDEFG." L. was staring them in the face, he was so obvious.
    Your experience in Oz, sadly, is similiar to many people here. I guess it's a global problem. :tongue:
    Check your e-mail again. I'm going to send you a picture of L. looking positively UNDERWHELMED with his prom date. You'll laugh. I can't tell you how much he did not want to go because it was interrupting "my movie."