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Asperger's Syndrome
Bunks
Australia Veteran
Hi all - I posted this in the Useless Announcements Thread but thought it may have gone unnoticed.
I was after some feedback from anyone who has (family or themselves) Asperger's Syndrome.
My 4 year old daughter was diagnosed with it yesterday. While I kind of expected it I am still feeling a bit down about it as it appears people with this difference face some pretty tough times in life due to their inability to follow social norms.
Any advise from a parent of a child with AS would be appreciated.
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I'm not a parent, but I was a principal in a school where we had quite a few AS students.
An important question is where is your daughter on the AS spectrum. Having dealt with middle school aged AS children, I'm not sure how early a place on the spectrum can be identified, but if you do have that information, it might be helpful to those responding here.
Thanks @vinlyn.
I don't know where she is on the spectrum I'm afraid. She functions fairly well generally but the main things I notice in her (AS related) are:
Her motor skills are about 1 and a half to two years behind. She can't climb down a small ladder from a bunk bed or trampoline. She can't ride a bike of any sort. She is just starting to toilet train now. She can't dress or undress herself.
She has had chronic constipation since birth.
She speaks to me pretty much just in monologues i.e. she tells me word for word her favourite book or script from her favourite TV show (constantly!).
She will just talk at you and seems to have no interest in any response you give her.
She shows little or no affection to anybody. When I come home from work my 15 month old son will excitedly rush to me while she appears to be completely oblivious.
When reading a book she'll often insist you read it in a certain way e.g. you can't start each page until she has lifted a flap. Failure to do this causes her to completely melt down. The same will occur if you interrupt her telling you a story or if you don't say exactly what she wants you to say (word for word).
She has a lot of trouble playing with peers. If they don't adhere to her game exactly as she wants to play it she flips out and storms off! She also can't join in with games that other kids have created. Funnily enough the one kid she plays with well is an 8 year old boy with Asperger's as well!
She seems to be very susceptible to loud noises. I often catch her with her fingers in her ears grimacing even at noises that don't seem to be that loud to me.
Just as an aside, the reason we have picked this up at an early age is that my wife has a number of close family members on the Autism Spectrum so we were wary of our children
This is way out of my age-range experience, so I'll leave immediate dealing-with-it advice to those whose knowledge base is more with this age range.
But, let me reassure you that out of our kids who were identified as AS, most did reasonably well in our school's environment; were a bit out of the mainstream socially, yet had friends that they identified and socialized with; and went on to high school and then college or university and were relatively successful. Yes, we had a few rare cases that were extreme, but VERY, VERY FEW.
I can't speak about what's available in Australia. But some schools and staffs here are better than others in dealing with AS kids. If you have school flexibility -- at whatever point that becomes available -- you should look into it. I would also suggest you look for an AS support group...one that is positive and doesn't dwell on the negative.
And also, be optimistic. Back in the 1980s we had our most extreme AS case. A 12-13 year old boy named Eric. We didn't have any idea what to do with Eric, and I'd say we botched his education completely...except I'm not sure that anyone would have known how to deal with Eric. I don't think it's that we never got another case as severe as Eric, I think that as years went by, schools and educators learned so much about how to work with AS kids. How much the knowledge and experiential base has grown over the past 40 years is quite remarkable, and to me, uplifting.
Finally (at least for now), try to be as objective as possible as you deal with the professionals in your daughter's school(s). We had some parents who were so over-involved and over-protective that they hampered our work. We had some parents that were way too hands-off, and didn't support our staff in their work. There's a delicate balance between the as a parent I know my child best viewpoint and the I trust my child's teachers completely viewpoint. You sound as if you will be parent who will be able to ask good questions, make suggestions, critique teaching techniques. I think your daughter is quite fortunate to have you as a parent.
Agreed. For what it's worth, I'm adding this bit only on the chance that it might give you a bit of hope. Folks with Asperger's you might be familiar with:
Bill Gates, Dan Akroyd, Robin Williams, Darryl Hannah, Judy Singer (Australian disability right advocate), Tim Ellis (Australian magician and author) and a host of other well known, successful people. In addition, there is a long list of people who lived before Asperger's was 'discovered' but who historians believe had it including: Abe Lincoln, Albert Einstein, Alexander Graham Bell, Mozart, Benjamin Franklin, Emily Dickenson, Carl Jung, Franz Kafka, Friedrich Nietzsche, George Washington, Henry Ford, Isaac Newton, Jane Austen, Mark Twain, Michelangelo, Nikola Tesla, Thomas Edison, Thomas Jefferson, and Vincent Van Gogh.
Thank you @yagr and @vinlyn. My wife and I are very much involved in our little girl's life. We will definitely be trying to make life the best it can be for her.
Australia does seem to have quite good support / therapy for the kids but not a huge amount for the parents.
Something I read that piqued my interest was a comparison between AS and homosexuality (as an example). We used to perhaps look at trying to "change" gay men and women in order to be "normal" however these days most places accept homosexuality and even celebrate it in a way. I guess what I am trying to say is that I am keen for her to have the necessary therapy to help her but I also want her to be able to be who she is without feeling like she has to fit the mould of normal society.
At least here in the States, in more progressive school districts, there is much more teaching to the student approach now than every before. Not all kids have to learn the same way. Some learn best by hearing, some by seeing, some by touching, so more and more teachers are encouraged to approach learning by all 3 modalities. And that carries over into teaching AS kids (although in different ways). Of course, many classroom teachers are still resistant to changing how they teach (sort of the it was good enough for me, so it's good enough for all kids attitude), and that is one thing an alert parent can watch for.
What kind of special ed laws do you have over there. Here, once a student has been identified in one of many categories, specific strategies must be applied toward teaching that child. Some of the work may be done in mainstream classes, but some work may be done in specialized settings...usually a balance of the two, unless it is an extreme case.
The psychologist who assessed her said she will learn through visualisation. I am not sure what that means? Maybe you could shed somelight @vinlyn?
Um, try this: by seeing in her mind's eye things, and seeing new things, and associating them with what she knows visually already, or linking to that. Basically learning by seeing. I visualize to learn, partially.
Personally I've never heard of that particularly for AS kids, but would suggest you look into the 4 modalities of learning.
My five year old grandson is autistic. His speech development has been slow and reluctant, as if talking is uncomfortable somehow (he mumbles, whispers, runs words together really fast as if to 'get it over with'. Otherwise, he is only potty trained if he is not wearing clothing on the bottom half, even at night. Needless to say, the first things to come to mind is how hard a time our autistic kids have in this world. One thing to keep in mind is that 'neurotypical' kids/people are suffering in samsara too . . . and I'm not sure that all autistic people suffer MORE. They sure do suffer differently.
I've learned a lot about autism from an adult on the autism spectrum -- my daughter in law. She's a geologist (do NOT get her started talking about schist layers or landslides for god's sake!!) and high functioning NOW. According to her she was a complete mess as a child. She's studied autism from stem to stern and told me that much of the so called 'normal' milestones DO occur for autistic kids but at a later time. She says when she was 15, she was a lot more like a 9 or 10 year old developmentally. She went through 'adolescence' in her 20's. She is sometimes awkward socially, painfully shy, brilliant and has issues with remembering much of what goes through her head ALSO goes through everyone elses head, too.
What with all the awareness of autism, and the adult autistic population coming of age and advocating for themselves, the world your daughter and my grandson will enter is a kinder and more understanding world, hopefully only to get more so.
Grief is normal; AND, remember, you haven't 'lost' a child, you've always had the same child no matter what label gets pinned to her little dress. She can and will have a life of her own, and as it looks now, a greater community of fellow autistics to belong to
Perspective is everything here, as it is every where else.
@vinlyn said 'You sound as if you will be parent who will be able to ask good questions, make suggestions, critique teaching techniques. I think your daughter is quite fortunate to have you as a parent.'
True. I think she'll be fine. ...
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Visual learning can be done anywhere. Let me know if you need any help with research and just go based on her and her needs. Forget about society's expectation. She needs love, attention and care....the same as anyone else. Your blue eyes are just as beautiful as my brown eyes. ...
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Let our little fairy fly .......
@Bunks, maybe we can talk in PM or email. My 17 year old son has AS, and his father did as well. So I have been dealing with it since my son was a young child and also with his father as an adult (who wasn't diagnosed until he was 30).
The best thing I can tell you is, knowing now as young as she is, you have a great opportunity to get her the social skills building and so on as she grows up. It makes a big, big difference. My son was not diagnosed until he was a middle school, despite trying for years to figure out why he was different.
Right now, he is 17. He is taking the ACT next month, he is getting ready for college, he is going to prom, he has a job (and is looking for a second, lol) he has a drivers license. he is in 3 sports, has lots of friends, and overall does very well. He still has challenges other kids don't, but he learns what he needs to learn to go through life. College will bring new challenges as well as living on his own, but he is quite capable of learning all those things and he does better than I ever expected.
When he was young, he did not speak. he did not actually talk until he was 3 years old. He didn't ride a bike until he was 8 or 9. He didn't tie his shoes normally until he was like 12. He follows rules to a T, which is nice on some fronts and difficult on others, lol. Our biggest obstacle is that he will not do something unless there is a logical reason for is. He is extremely logical and literal, and abstract topics, including other people's thoughts and emotions, is very hard for him to understand. So unless things can be explained to him in a way that makes sense to him, it's not on his radar, and that causes problems sometimes.
Anyhow, seriously, I could write all day. I will read the rest of the thread closer when I get back from dropping off my preschooler. I have some books I can recommend to you if you are interested.
Visual learning- understanding things best by seeing pictures or objects rather than hearing about them (auditory) or reading about them (abstract). For example, a map would work better than written directions. Picture schedules can be helpful to help know what happens when.
Wishing you all the best. Will post more as I think of things/resources/approaches.
http://www.amazon.com/Thinking-Pictures-Expanded-Life-Autism/dp/0307275655
I've always admired Temple Grandin, who has autism yet earned a PhD in animal science - have bought her books and been to talks she gave. Although she may not be considered to have "right livelihood" by most of us - she designs slaughterhouses - she has intense empathy for farm animals. I haven't read one of her more recent books, "A Personal Look at Autism and Asperger's", but it might be something you would find useful, @Bunks.
it's not just that she designs them. Her love for animals drove her to seek a better solution for something that already existed, she sought to improve the situation of the animals and their suffering. While she is not working to end slaughterhouses, I think all the work she has done (which in turn has led to the design of things that decrease anxiety in many animals and children alike) can still be considered right livelihood. In my opinion, anyhow.
Of her books, I found Thinking in Pictures to be the most helpful to better see the world from my son's point of view. Also, "Freaks, Geeks and Aspergers" which was written by a kid. It's more designed for kids who are preteens, but still very helpful. Also, this is not AS or autistic-specific, but "Raising your Spirited Child" was an amazingly helpful book for me on ideas for how to manage my son before he even had a diagnosis. It was a life saver for his 3-10 age span.
Also, and I could be wrong, I'd have to re-read the book...it's been a while. But my recollection of her talking about her experiences as a child which she then applied to problems she saw in slaughterhouses had more to do with logical problem solving than empathy and relating to the animals plight. She realized as a kid that being placed under pressure relaxed her over-stimulation nervous system. When she realized animals preparing for a vet visit or to go to the slaughterhouse were experiencing the same overstimulation and sensations, she devised a way to solve that problem.
Kids with AS vary a lot, just like kids on the spectrum otherwise. But a lack of true empathy is part of that. It is not something that comes naturally to most of them. They have to learn it, and it has to have a reason. My son (and his dad as well) understands others have feelings, but he cannot put himself in their shoes to understand at that level how they feel. I can tell him someone feels sad about something, and he'll know what that means. But he cannot put himself in that position to think "if that was me, I'd feel this way" because often times, he would not feel the same way most of us think. When his friends go through typical teenage problems, he does not experience those things like they do. So i have to explain to him "I saw your friend Alison broke up with her boyfriend. Because you and she are such good friends, it would be good if you acknowledged that event in her life and here are some ways you might be able to offer support." None of that comes naturally to him, nor to most AS kids (in my experience).
There are challenges, to be sure, but they can be overcome and worked with. I can say, without a doubt, that my son's AS has been an absolute blessing for him and our entire family in many ways. He doesn't know how NOT to simply be himself, and there are some amazing life lessons in spending so much time to someone who doesn't have all that self doubt and lack of confidence in who they are and their abilities.
Hi Bunks,
My three nephews all vary on the spectrum of AS. The middle one was strongly "affected". Luckily the schools are very helpful with providing good education and tailoring it to the individual child. I don't know what school you are thinking of sending her too, but my nephews all went to state schools and govt funding was provided to help with education and medication. However, with all three of my newphews, diet also played a MASSIVE part in it. People scoffed at the details paid to the food the boys ate, but now J's in high school and he interacts well with people, no longer talks "at" you but listens and responds (not as much as "mainstream" kids, but he puts so much thought into his responses).
My goddaughter is in Yr 1 and was diagnosed with "Oppositional Authority" which is apparently part of the AS spectrum (though I've never heard of it). My bestie transferred her to the local Catholic school and she's been categorised as special needs. The CEO (Catholic Education Office) have provided funds for the school and also have ensured the teacher teaching her this year is qualified to do so.
It's overwhelming for you I imagine. But please rest assured that you daughter will not be overlooked or forgotten in our school system. Sir Mad Monk may be a lot of things and trust me, needing the NDIS myself now I KNOW how frustrating it is to deal with govt departments, but he's left the schooling alone. (so far)
In metta,
Raven
My step brother is autistic but I don't think Aspergers. He thinks in pictures we think. He can identify a person in a crowd immediately. That 'where is waldo' thing he could do almost immediately. He watches Disney videos all the time which keeps him from being bored. When he is getting upset often my dad will say 'use your words' and he then expresses himself.
I think he is very responsive to love given by others. He loves to talk about his new Backstreet Boys shirt. He always has something to show. When he was a child and adolescent he took juice that had vitamins in it, but they doesn't do that now.
His meals are all planned out and there is a limited selection of things he will eat. Sometimes when growing up his mom had to sit on him until he would calm down when he was upset. It may sound bad like corporal punishment, but in his case it worked. His mom would say "who's the boss". He is a great guy to have in the family. We take him how he is.
@dhammachick - who is Sir Mad Monk that you refer to?
@Bunks Mr Abbott. Just trying to be humourous (and failing epically)
:eek2:
Ahhhhh @dhammachick .....I thought you may have been talking about Christopher Pyne!
@Bunks - yeah they're all a bit dodgy