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Aspergers Syndrome - A long story cut short

kez1969 by kez1969 Speaking(April 2008) (rank 500+)

Dj is now 16, but I knew he was special when he was born. As Dj grew, I noticed he was very smart but really loved his routine. There were lots of little things i noticed about him as he grew but I didnt know how to approach someone about

it, they might think i was crazy. After starting grade 2, his teacher approached me and told me he was overobsessed with sonic the hedgehog...he lived, ate, breathed it..all his stories were about it, his life was literally sonic the hedgehog. Ok, i knew there was something going on, but again, how do i approach my doctor and what do i say.

Time moved on, more things were coming to light. Being quite excentric, obsessive, finding it hard to mix with other kids, really bad social skills, not being able to read non verbal cues (body language), always getting in peoples bubble space, got upset when the mower started (his ears were sensitive to that noise), picking with food, the list goes on.

When entering high school, it really hit home that something was going on. Going from classroom to classroom really through him out. Then the bullying started. That bought out some things in dj that was so not part of who he was. The bullying got really bad, that bad that the high school payed for Dj to go to private councilling. At this place, a wonderful phsycologist suggested after two meetings, that dj might have aspergers syndrome. He didnt know alot about it but he was nearly text book. An iq test was done first, it was through the roof! then the rest of the testing was done. Yes, he had aspergers syndrome. Dj and I cried when the diagnosis was made. It was a relief that i wasnt crazy...and dj felt relief because he knew he was different but now he knows how and certain feelings he had he didnt understand and now he knows. Alot of our story cant be put into words.

We had only recently started Dj off on medication for his own wellbeing and because he felt as though he needed a bit of assistance. I put it off for a  long time and he was only diagnosed with AS last year at the tender age of 15. It is still hard everyday, AS + teenage hormones dont go down together really well.

We dont go out very often because Dj doesnt handle it very well, especially restaurants, being socially immature inhibits him in that way. He also speaks off-topic ALOT, we joke around and call it his 'verbal diahherea'...Dj's has recognised this wording now and it actually has helped him recognised when he is doing it. We were at the local markets the other week and my hubby and i were buying a ticket in a raffle for a cause and dj was standing there and said out of the blue, 'gee, i would love to be a bird'. This we are used to hearing (off-topic stuff), but the poor guy we were getting the tickets from thought it quite strange...the look on his face said it all. We find it quite funny at times and we just answer dj.

Dj is always the first one to offer a compliment or the first one to notice if you have had a hair cut. He notices changes even if it is minute. He is the most caring, loving child and always has been. Although recently, before putting him on medication, he got very verbally violent and would hit walls out of frustration. This was so 'not him', so one of the reasons we finally gave in and sort medication. He comes up and gives me cuddles again, alot. We still have our odd outburst but alot better than it was.

Another thing, you have to explain things in great detail. For example, to do the nightly rubbish. You have to say 'go to the kitchen, get the rubbish out of the rubbish bin there and take it down and put it in the wheelie bin'. You cant just tell him to do the rubbish. Same goes for cleaning his room. You have to write a list of things he has to do and how to do it.

He cant just catch a bus either unless you go with him or you give him a written list of what to do and where to go. You cant just tell him to catch the no.2 bus. Everything has to be in great detail so he doesnt get confused, thus leading to frustration and him getting lost! Just remembering he has a very high IQ. So with everyday things he has trouble but again, you can have the most detailed, mature, stimulating conversation with him too.

A little bit of a rundown:

Named for a Viennese physician, Hans Asperger, who in 1944 published a paper which described a pattern of behaviours in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills. 

In spite of the publication of his paper in the 1940's, it wasnt until 1994 that Aspergers Syndrome (Aspergers Disorder) was added to the DSM  IV and only in the past few years has AS been recognized by professionals and parents.

Aspergers Syndrome is a neurobiological disorder. Persons with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights. The person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. Therefore, many behaviors that seem odd or unusual are due to those neurological defferences and not the result of intentional rudeness or bad behavior and most certainly not the result of 'improper parenting'.  By definition, those with AS have a normal to high IQ and many individuals exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naivete, those with AS are often viewed as eccentric or odd and can easily become victims of teasing and bullying.

I have also heard it being referred to as High functioning autism.

As a child, AS was alot easier to deal with, but as a young adult it is hard and i mean hard. I have researched alot and asked alot of professionals about this so i can learn more and more.

My current mother in law (who is Dj's step Nana)has been a great source of help and support as she works with kids with special needs and has been able to give me some great advice too. The whole family has been very excepting of Dj's condition.

Life may not be perfect, but i will say, my son is.

Any contributed content above is the subjective opinion of that member or external author, and not of Minti.com Pty Ltd. If you are searching for health related advice we strongly suggest you seek professional medical support. View our Terms of Service for more details.
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sandra106
September 3rd | sandra106
Re: Aspergers Syndrome - A long story cut short

great article thanks for sharing your experiences gives alot of insight.



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Aqua2310
May 7th | Aqua2310
Re: Aspergers Syndrome - A long story cut short

Thank you my son officially has moderate gobal development delay however I have begged for him to be retested however everytime falls though and the organizations dont complete a test. I believe he is autistic and has answered yes to all things except one grouping on autistic websites.  I know what you are going though.



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jmivey67
March 2009 | jmivey67
Re: Aspergers Syndrome - A long story cut short

Thank you for your story. I have a step-daughter aged 18 with AS as well as my 7 yo son. The key is early diagnosis and making the school understand what he needs and how to do it. Be there rock and their sounding board. Demand what is best for them and follow through. I was a quiet person before my son was born and now don't mess with "momma bear". My son's skills are improving every day through hard work and love. Good luck with everything. You sound like you have a wonderful family :)



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mladen
February 2009 | mladen
Re: Aspergers Syndrome - A long story cut short

Hi Kez,

You mentioned that your son is taking a kind of medication. I live i Netherlands and I never heard about medication for children with Asperger.

I have a 10 yo son who is diagnosed with this disorder when he was 4 yo. There are a lot of similarities with your son, also concerning high IQ.

Could you tell me more about the medication your son is taking?



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disco
January 2009 | disco
Re: Aspergers Syndrome - A long story cut short

Hi Kez!!

Thank you!  I only joined Minti yesterday and stumbled across your article today.

We have a 5yo foster child in our care and we are waiting to have him assessed for AS.. Things you described are so familiar..

Thank you again for your article, I will push our Case Worker further now to have the assessment. :-)

Cheers



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mumsfun312
December 2008 | mumsfun312
Re: Aspergers Syndrome - A long story cut short

Hi Kez, thank you for sharing, our little man is 7 now and has been diagnosed since 3, I firmly believe in letting him be, his is quirky and regimented but he makes us laugh daily.  We also are very lucky he has had early intervention and speech therapy and now at his wonderful school they are working on his social skills (yep still have work there) because he is so black and white in his views he doesn't always understand the game that the kids are playing but now at least he is interacting.  Even though he has Aspegers I wouldn't change him for anything as he is the most loving little boy I know.  Goodluck to you and Dj as he sounds like a delight.



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kim77
December 2008 | kim77
Re: Aspergers Syndrome - A long story cut short

Hi Kez. Thank you for sharing your great story.  I have a 14 year old son with Aspergers.  He is my special child.  Thankfully he was diagnosed at age 7 and received one hour a day, one on one with a special needs teacher up until year 6 of primary school.  I believe that these four years of extra help at school made the world of difference to my son.  He was taught lots of social skills that he just could not comprehend on his own.  He has just finished his second year of high school and is doing great.  We are so blessed to have these sons in our lives.  Every day is a challenge.  I wish all the best to you and dj.  Kind regards, Kim.



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evilone
November 2008 | evilone
Re: Aspergers Syndrome - A long story cut short

i know what it is like to have special needs kids. i  wouldnt change a thing either. both of mine are adhd intellically impared and the doctors also agree that both boys are aspergers. we have them on medication  and we also have them on fish oil. we are lucky that we are on two arces of land. both boys are very clever the youngest one is great at sports and loves to ride motor bikes, he is also in the choir at school. the oldest one goes to a special school as high school was comming and you could see he just would not cope with it.  he has gone from a d e student to a a b student and has a talent for painting and everyone is so surprised that  he can paint so well. he also loves painting.  he recieved a achievement award from frank warwick for this. every day has new and different challenges but it has also taught me and my partner that anything is possible to achieve



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Gs-Bubble
November 2008 | Gs-Bubble
Re: Aspergers Syndrome - A long story cut short

my eldest son is now 21 he is also an aspergers sufferer. the hardest part that we found to deal with was the self harming which is apparently common trait. he also had alot of problems dealing with 'voices in his head' at first he thought that he must have been schizophrenic but after an extremely long period of time we finally found someone who could explain things to him at his own high level of intelligence. when he gets stressed out - he disasssociates himself from his own subconcious and there for hears his own thoughts echoeing back in the form of a voice. when he is calmer he realises it is just his thoughts but for a very long time he really believed he was going insane. this problem is apparently caused by something to do with his frontal lobe going through a change around the age of 15 going to about 25. the doctors said that it usually only lasts about 10 years and will eventually settle down by itsef. 21 years along and only 4 left to go. life for him is a struggle but he is still hanging in there :)



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aj2008
November 2008 | aj2008
Re: Aspergers Syndrome - A long story cut short

Thank you for sharing. One of my daughters was educated with a boy who has AS and until his Mum managed to get a diagnosis, the boy was always in trouble at school. Then when he was diagnosed, the school gave him no support. Eventually he was moved to a private school and he is getting on a lot better.



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mystikal
November 2008 | mystikal
Re: Aspergers Syndrome - A long story cut short
My fiance' actually has a mild form of AS and it took me a couple of years to get used to his behaviour. He is obsessed with the human body (i.e medical information), the army and star wars. There isn't a day where we don't discuss something from his favourite category haha I guess it comes in handy that he is a paramedic because of his love and obsession with medical information, he is highly intelligent with it. Some other things I noticed is his outstanding memory and over sensitive ears. I've had to teach him how to act in a serious relationship as quite often he got in other womens personal space and it made me quite upset but knew he was oblivious to some social queues. If you know somebody is suffering with AS make them feel at home by letting them talk about one of their favourite subjects and they'll feel right at home. You can sure learn a lot from them too! I also learned a trick that works especially well for children who have AS and get upset when their routine is broken. An example... say little Johnny has AS and every time his parents need to take him to his grandmas house it is very difficult because he will cry, kick and scream because his routine is broken. Draw a picture of a house, show him a photo of grandma and explain to him that you're about to go in the car to see grandma. Discussing your routine before you do it to someone with AS makes them calm and easier to deal with! I constantly have to help my partner plan his day out if something is about to change.


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cluscombe
November 2008 | cluscombe
Re: Aspergers Syndrome - A long story cut short

Many people know of somebody with AS but not well understood. You have shared some very useful words and explanations



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joburkey
November 2008 | joburkey
Re: Aspergers Syndrome - A long story cut short

hopefully this article reaches out to those who don't understand what this is, what a wonderful article



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mom2jedd
November 2008 | mom2jedd
Re: Aspergers Syndrome - A long story cut short

Well written. Hopefully it will make AS more aware to others.



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bjeannie
November 2008 | bjeannie
Re: Aspergers Syndrome - A long story cut short

Thanks for a great piece kez. It can be really hard to get doctors to listen if they've already made up their mind. They seem to forget that parents and teachers spend a lot of time with these kids and have a better understanding of what their life is really like. Wishing you and all of your family all the best.



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suatyen
November 2008 | suatyen
Re: Aspergers Syndrome - A long story cut short

Thanks for sharing. It really opened my eyes



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shortie
November 2008 | shortie
Re: Aspergers Syndrome - A long story cut short

I'd just like to say I think you are so strong and it sounds like you have a wonderful son.  I have just attended a course, for parents and families of children with ASD and Aspergers Syndrome, with a friend of mine who's son was recently diagnosed with ASD.  She's been finding it difficult to come to terms with but i think the course really helped.



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      Tinks30
August 11th | Tinks30
Re: Aspergers Syndrome - A long story cut short

ive never found it difficult to except that my son has asd i came to terms with it well before they diagnosed him with it because i knew.... its fighting to get him help thats the hardest  and the most upsetting .



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kyley79
November 2008 | kyley79
Re: Aspergers Syndrome - A long story cut short

You should be proud to have such a loving and jovial and compassionate child  - your wonderful parenting shows thru this child and thru your family. congrats.



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JadieLady
November 2008 | JadieLady
Re: Aspergers Syndrome - A long story cut short

That's awesome... I actually had my 2 yo tested for aspergers recently as my family has a bit of tendancy towards austism and such, and I had noticed he was a bit quirky. Turns out he just has anxiety and obessive compulsive disorder.... which means he also likes his routines, does his puzzles upside down and repeats everything said to him a million times. He also has a higher than average IQ, (they only said higher than average, didnt actually tell us what it as), incessantly labels everything and is terrified of anything he can't control, ie the sound of the vacuum cleaner, the coffee machine, being outside when its windy... birds, but only when they are looking at him... you get the idea. Its great that you know how to help DJ now, Im sure its made some huge improvements and his life that much more enjoyable.



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fi777
November 2008 | fi777
Re: Aspergers Syndrome - A long story cut short

Thankyou so much for ths wonderful article you wrote about your son,which descries my middle son Kyle (14) perfectly.He is also on medication but sometimes it is so heartbreaking when others do not see my son for the beautiful person he is.

I hope your son  DJ ,as with my Kyle, have,even with all the challenges, a wonderful fulfilling life.

Best wishes



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gavanj
October 2008 | gavanj
Re: Aspergers Syndrome - A long story cut short

Fantastic article, having just found out that my 8 year old niece has apsergers, (or maybe autism, they are not sure yet!) I could definitely relate. The high iq, the obsessiveness, the off the topic comments, are all definitely apparent. Good luck with DJ as he gets through the teenage years which are probably the hardest for anyone, let alone someone with AS.

 



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sealsista72
October 2008 | sealsista72
Re: Aspergers Syndrome - A long story cut short
This article is fantastic!!! My son has been diagnosed with autism. We used to say he has Asperger's Syndrome too, but usually I just say he has high functioning Autism as most people haven't heard of Asperger's. My son is now almost 15, and I am trying to work out what I want him to do with his future. His mental age is still quite low, and he also has epilepsy, so I really need to think carefully. He goes to a special high school, and they have been fantastic. Great article, well done. Tanya.


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purplecupcake
October 2008 | purplecupcake
Re: Aspergers Syndrome - A long story cut short

wow what a story!! a very close friend of mine has a son with AS aswell and is very simlar to how you describe dj, they are a chanlenge but well worth it, i and my little girl love hanging out with our AS friend and his family , he's very gentle and caring with her always and in some ways seems to really understand or contect with her on a level i dont get.... good luck with your futures together. happieness to all



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taniac1
October 2008 | taniac1
Re: Aspergers Syndrome - A long story cut short

I thank you for your honest account and even though it was hard to hear you accepted and dealt with it the best you could. I work with children with all varying needs including Aspergers. There are some children we suspect but parents won't accept to get tested becase they don't belive anything is wrong. I truly feel for the child they deserve to have help. my Aunty is oppisite like yourself she knows her son is different and is trying anything to help and is on a wating list to be tested it's been 2 years. I try and help her when I see her but she lives in a different town around 2 1/2 hours away. I applaud you it's hard work just looking after them but having 24hrs a day can be testing I am sure.

 



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MotherCat
October 2008 | MotherCat
Re: Aspergers Syndrome - A long story cut short

I can totally see where you're coming from with your story. Although I am yet to go thru the whole teenage thing, two of my boys have been diagnosed with Autism Spectrum Disorder and one also with mild Intellectual Impairment. We are currently looking at number 3 for ASD before he starts school next year. They are also obsessed with various things/characters, love their routines. Number 3 is currently doing the "lining up cars and counting them over and over" thing. That's something they all have had in common among other things. Some things have been completely the opposite between the boys too. They are so individual and we are forever learning to deal with them and their "triggers". We're still going thru the "episodes" with numbers 2 and 3, number one has not had an episode since starting on medication. He can also focus a lot better at school. Medication for numebr 2 is on the cards right now because he is getting just that much bigger and stronger and we are having trouble (physically) handling his episodes. We have a long road ahead of us, but the ride isn't all bad, we have a good times too, which far outweigh the bad. They are beautiful kids and we can't not love them, warts and all!

Caite xoxo



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nanmaid
October 2008 | nanmaid
Re: Aspergers Syndrome - A long story cut short

When my son was born I instinctivly knew something was wrong.  When I took him home he would not stop crying. Even hugging and rocking him wouldn't work.  We had to stimulate and interest him in something.  He was terrified of loud noise and screamed when anyone came to the door or something in the house was being moved.  He showed early signs of obsession.  I thought he might be autistic, but as he was number five and my eldest daughter was twenty he always had plenty of stimulation if he liked it or not.  As he got older he became obessed with Thomas the Tank Engine and would watch it all day for about six months.  He taught himself to read when he was three.  That really freaked me out.  I noticed he used to flap his hands when he was excited.  In grade five, which was a class for the gifted and talented his teacher told me she thought he might be borderline Aspergers.  I went home and looked it up.  Yep sure enough that was how he was.  I had to tell him he had to look people in the face when they speak to him and spend countless hours talking to him about his fears.  He is now 15 and coping quite well.  I have explained the Aspergers thing to him and he is ok with it.  He pushes himself out of his comfort zone but goes through a personal hell to do it.  He is a loving, caring boy, never any trouble.  He wants to be a firefighter which I think is a good proffesion for him as I can't see him being in a job where he has to comunicate with the public.



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kaye1609
October 2008 | kaye1609
Re: Aspergers Syndrome - A long story cut short

Our son also has AS and will be 16 in a couple of weeks. He has been a real challenge but has not the high IQ.  We too have to only give one instruction at a time.  Your article about your son is great and much the same as our son.  Thanks again



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neets
October 2008 | neets
Re: Aspergers Syndrome - A long story cut short

I studied Aspergers while at tafe (early childhood) and everything we were told was out of books. reading your story has shown me a whole different side to what i learnt. Thankyou

 



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kristylee
October 2008 | kristylee
Re: Aspergers Syndrome - A long story cut short

Hi there,

im new to minti and have to say that its the best site ive been on... My son who is 5 is currently un diagnosed as his doctor wants to wait until ethan's older to confirm anything (it doesnt seem to matter how hard i try, maybe its time for another doctor). But reading your story has just made me realise that i have to push that little bit harder to have something done now. He to is a carbon copy of your son, especially in the aspect of the detail you have to give them when you would like them to do something, tho he still has all the other characteristics you mentioned. Your story was just beautiful, they are amazing people and their intellegence just astounds me. My son is obsessed with numbers at the moment so his numeracy skills are quite good.

So i just wanted to say that your an inspiration to many and i hope that i can keep my wits about me as you have as my son grows older.



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highjacker
October 2008 | highjacker
Re: Aspergers Syndrome - A long story cut short

this gives me an insight into asburgers as my son too was diagnosed in 2000 at age 7 i knew there was a lot of myself in him and this gives me an understanding of myself  too

we work together in understanding it and he refuses to take medication as this makes him diferent (he hates diferent) but now he is working towards a goal (he wants to be a cheff ) now age 15 he lives with me and is happier than before and i feel the worst is over (violance developed early)



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BEAUTY
October 2008 | BEAUTY
Re: Aspergers Syndrome - A long story cut short

Hi, I was wondering if there are any parents out there in Adelaide who would like to get together with our kids and just chat. Maybe an afternoon in a park or somewhere?



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rcp-432
October 2008 | rcp-432
Re: Aspergers Syndrome - A long story cut short

i have a son  with severe infantile autism so i know what you mean by how hard it is



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joeanne
October 2008 | joeanne
Re: Aspergers Syndrome - A long story cut short

Hi How you going. Your son DJ sounds very special. That is a great story. Hope everything goes well for you and your son.

Joeanne



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alyx99
October 2008 | alyx99
Re: Aspergers Syndrome - A long story cut short

Hi kez, your story was wonderful and I want to congratulate you on the job you are doing with D.J because I'm sure it has been very tough at times especially when he wasn't diagnosed.

We have a fantastic school and accomadation for Autistic kids here in Mansfield, The kids come and stay for a term, get lots of one and one work with workers who are trained to know how to deal with these special children. They also go on camps with the families and get to know them  and offer support in many ways.

They are a fantastic bunch of hard-working people who really care about the kids and try and implement life skills in these kids so they can survive in this world as adults( sounds like you have done this with D.J).

I know because my best friend works there also I taught music to the children for two years which was a fantastic experience.

So good on you Kez, you are blessed with one special child indeed!



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Sylvah
October 2008 | Sylvah
Re: Aspergers Syndrome - A long story cut short

My daughter is in primary school and was diagnosed about 4 years ago. She is currently not on medication but only because at this point her behaviour is manageable with understanding. Reading this article had me going "omg, that's Miranda". She is a very special girl and I fear for her as her social skills are inadequate and she heads to high school the year after next. DJs story was touching and encouraging.



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      MotherCat
October 2008 | MotherCat
Re: Aspergers Syndrome - A long story cut short

Wow, finally a girl! It's unusual to come across a girl with autism/aspergers. I have heard that the ratio of girls diagnosed to boys is quite low. Something like one in every 10? I can't remember exactly.

Caite xoxo



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mummasmirf
October 2008 | mummasmirf
Re: Aspergers Syndrome - A long story cut short

Hi Kez, This comment may seem some-what delayed, since you wrote your article on your son DJ back in April, but I have only just stumbled upon this wonderful site and yours was the first I set eyes on. I have to say, that you wrote the most amazing story on DJ and I can honestly say, that you wrote it from the heart. We have something in common, I have a 20 (almost 21 yr old) with Aspergers. He was diagnosed when he was 8 years old. The way you describe DJ, I can relate to, as my son sounds like a carbon copy of DJ. He has his favourite chracters that he enjoys which have basically ruled his life. He loves pokemon and yugio and dresses up whenever he gets the chance. It can be a little bit funny when out and about and you have a "normal" looking 20 year old dressed up as a pokemon character...the looks on peoples faces are priceless!! But that sort of thing is what gets him by everyday. Back when he was in main-stream school, my son would only write (to the best of his ability) about and draw pokemon characters. The teachers would get annoyed and complain to me that he needs to do something else. I was really annoyed at this. At least he was writing and drawing, rather than doing nothing. Kez, you are so very lucky that you have been able to hold onto your son as long as you have. When my son was 15, I had to relinquish care of him. He got so violent, that no one in the house was safe. Even when we tried to sleep, my son would be walking around with anything he could get his hands on to use as a weapon. One night it was an iron bar that he got from a clothes stand that he had dismantled. He threatened to kill us all with guns and we were all scared for our lives. I made the gut wrenching decision to protect everyone, including my son, by having him taken into care. I had been abused by him before and I didn't want anyone else getting hurt or even worst, killed. That was over 5 years ago now. My son has been out of care for 2 years now, he lives independantly with support...he does struggle, but we are always working on that...it's a day to day struggle at the moment...it's very very hard...but I have to say, that he is a changed person, and I don't see the aggresive side come out much at all. But given the right circumstances, he can go off. We have a much better mother and son relationship now, As you have said in your story, there is so much to say that it can't all be put into words in this type of panel, but I have to say to you Kaz, DJ and the rest of your family, keep up the great work and I am so envious of the way you have held everything together up to this point. For those that maybe ask "what type of medication does someone take for As? Well there isn't anything specifically for asperegers, but by treating some of the symptoms or ailments that arise from having AS, you can assist in relieving things like anxiety, depression and aggression. My son takes zoloft for depression and a anti-psychotic medication called serenace for anxiety and aggression. After years of tring different medications, I have found these to be the best combination for my son. I know that there have been reports of zoloft being associated with suicide, but that has been in isolated incidents, and as with any medication, it has to be discussed seriously between the parent, patient and medical practitioner about the pro's and cons...what suits one person, doesn't suit another, it's a personal choice. Gotten side tracked now...thanks for sharing your story and I wish you well. It would be great if you could keep us all up to date with DJ as he progresses through life. Cheers



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BEAUTY
September 2008 | BEAUTY
Re: Aspergers Syndrome - A long story cut short

My son was diagnosed at the age of 11, so I really related to your story.



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abbatroy
July 2008 | abbatroy
Re: Aspergers Syndrome - A long story cut short

THIS WAS VERY HELPFUL AS MY ONLY SON HAS ASPERGER SYNDROME AS WELL HE IS 11 AND WAS ONLY DIAGNOSED THIS YEAR AND I'M FINDING IT HARD. IT IS COMFORTING TO KNOW YOU ARE THERE IS SOMEONE ELSE OUT THERE THANKS. 



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      kez1969
July 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

you are very welcome :)



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      kez1969
July 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

Hey,

I have found too that where i live there isnt alot of support here if any. I have done it much on my own although as i said, my hubbies family has been great when i need it. Somedays, i dont know where to turn, what to do and i feel very alone and feel like i am failing as a mother. I want the best for my boy, i really bust my butt to do the best i can for him. I know too, from experience, that there is a point that you can be a mum, a real mum and guide them the best you can and be firm and let them know what is exceptable. You sorta have to try and find a medium so that it isnt much of a strain on all. AS never goes away but each family and yourself will find ways to deal with AS and help your son to be the best he can be. It is all trial and error. Like you would have seen, we have just started him on medication but it has its on days and off days. Djs bad days are still really bad, i cry, he cries and we yell at each other sometimes but we always hug...and we do alot of that. That is another part i treasure :)



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      laurell
August 2008 | laurell
Re: Aspergers Syndrome - A long story cut short

Hi, my name is Laurell.  I'm new to this site.  Thanks so much for your story, sounds like an echo for my own son who is about to diagnosed with AS.  I was interested though as to what the medication was you are using for your son.  We were told there wasn't anything for AS.  We live in Australia. 



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      BEAUTY
September 2008 | BEAUTY
Re: Aspergers Syndrome - A long story cut short

Hi, my boy who is also 11 was diagnosed last year. Maybe we can get together and compare notes.



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kez1969
July 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

I know with the research i have done....aspergers is now recognised as its own syndrome and no longer part of autism. In the transition period, it was known as high functioning autism but is now known (even by centrelink & government authorities) as aspergers. It was frustrating me alot when doing research and who to contact as autism is alot different than aspergers and has many different symptoms. Researching Autism and researching Aspergers is two totally different things as people will find out.



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katierose
5.00 (Excellent) | April 2008 | katierose
Re: Aspergers Syndrome - A long story cut short

Thankyou for your article! I have a very close friend who has a son who is now 5. He exhibits many  of the behaviours you describe. I have long suspected he has Aspergers ( I have worked with many Special Needs students over the years ) but my friend is very defensive whenever it is suggested he is assessed for various reasons. He spent time in hospital on a regular basis since he was 9 months of age. I can understand why she is very protective.  I do not feel that I should mention my suspicions, but am there for her as a sounding board when she gets upset or frustrated. I think deep down she knows there is something not right, but isn't yet able to accept it! We no longer live live close, but on the few occassions we get together, my daughter will not leave my side as he has no concept of personal space at all and no real concept of social skills. He is a lovely child,very loving and very bright. He has trouble speaking when he is excited and repeats himself several times before saying what he wants to. I love them alI dearly and feel for the family and the road ahead that they will face. As a friend, I feel I should keep my opinion to myself to make sure our friendship remains and be there for her when the diagnosis is finally made.



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      kez1969
April 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

My son had tumors as well in his neck which he had many surgeries for and had a pic line to his heart to deliver medication, so believe me, i can understand her protectiveness.

But, getting it diagnosed is a priority. I was selfish not getting it done sooner, no matter what, i shouldnt have cared if a doctor thought i was crazy.  If I had dj diagnosed sooner, life would be allot different for him now. The sooner he is diagnosed, the sooner he can get support and the sooner the family can deal with it. I know it might seem a little harsh being so blunt but it is true.

I feel for her but the longer she hides from it the harder it is going to be when it finally is diagnosed. It is very sad.

 



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           katierose
April 2008 | katierose
Re: Aspergers Syndrome - A long story cut short

Hi Kez,

I know I SHOULD do it, but I know my friend has cut herself off from other friends and family  that dared suggest anything was wrong. He is her first child and is like a mother bear on the defensive if anyone dares suggest anything - as her sounding board, I hear it all!!!!! My mother-in -law knows them well and she is a very experienced nurse, she wholeheartedly agrees with me, but she too is reluctant to mention it! She raised it with the childs paediatrician, but unfortunately, the family moved interstate before any assessment was made. He suffers from febrile convulsions ( they have at times thought it was epilepsy, but it only occurs when he spikes a temp) He has continually been in and out of hospital. I can only hope that now he is at pre-school full time, it is raised by the school. It was raised by the previous pre-school teacher and she wanted him assessed by student services, she discussed it in depth with me and I supported the idea that the assessment take place- I told her that it can't possibly hurt and if it makes his teachers happy, then they will be more proactive with him in the classroom. She was a little taken aback and didn't ring or answer calls for 2 months, when she did, she said she had refused the assessment as she didn't think it was necessary and shortly after they moved interstate with her hubby's work. I really am reluctant to be the one that brings her world crashing down. Not sure what else I can do apart from being her worst enemy in the world by saying I think her son needs assessment! Her second son is delightful and I think bears the brunt of his elder brothers anti- social behaviour  at times. My friend NEVER mentions it to me, but does to a mutual friend ( who thinks there is nothing wrong with the eldest except that he is just too bright for his own good and gets frustrated!!! She is also very defensive of his behaviour!) I know she sheds many tears of frustration, but will never say a word of it to me since I supported the idea of his being assessed. I feel like I am between a rock and a hard place!



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                kez1969
April 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

I feel for you alot. I have just helped a friend in a similar situation after reading your last post. I lost her friendship for a bit because i  pointed out things but she has just come back to me, thanking me.

I think some people might get embarrassed at the fact their child has 'something'. But you are right in the fact that something should be caught through school and that way, he has to be tested. hopefully. I thank you for sharing your story with me, it frustrates me too as i am sure it does you. You are an amazing friend to have.



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      BEAUTY
October 2008 | BEAUTY
Re: Aspergers Syndrome - A long story cut short

Perhaps one day you can "innocently" leave a story about AS lying around where you know that she will pick it up and read it. Let her make theconnection herself.



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kez1969
5.00 (Excellent) | April 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

When i first wrote this i did it breifly.....as i remember things to put in i have been adding....there is alot i can say but have to find the words.



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Kellzacar
5.00 (Excellent) | April 2008 | Kellzacar
Re: Aspergers Syndrome - A long story cut short

Hi there,

I have many friends with sons that all have AS, mostly they are still in Primary school but I found this interesting and will be forwarding your article on . .

Cheers Kellz



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      kez1969
5.00 (Excellent) | April 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

yes, pass it on please. The more info the better, although, every child is different.....but more help the better.



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janicepovey
5.00 (Excellent) | April 2008 | janicepovey
Re: Aspergers Syndrome - A long story cut short

 I also have heard fo Aspergers Syndrome, but never  knew anything about it, thanks for sharing this very informative advice & your son;s touching story.

It must have been a big relief to finally have a name for his condition and putting you at ease with the thought that you were not crazy.....but a mother knows when something isn't right with their children..

Cheers Janice



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Juzzy
5.00 (Excellent) | April 2008 | Juzzy
Re: Aspergers Syndrome - A long story cut short

Great Article, never knew much about AS. Now i am interested in finding out more. Thanks for sharing your story. Good Luck to your son and Family.



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nell18-3
5.00 (Excellent) | April 2008 | nell18-3
Re: Aspergers Syndrome - A long story cut short

Thankyou for sharing your story

xxx

 



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Libby24
5.00 (Excellent) | April 2008 | Libby24
Re: Aspergers Syndrome - A long story cut short

this sounds like my son to a t. we are currently going through the process of waiting for a re assesement as he was diagnosed with PDD-NOS 2 years ago.



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August88
5.00 (Excellent) | April 2008 | August88
Re: Aspergers Syndrome - A long story cut short

Thank you for your story. There is a group on here for Aspergers too if you are not already a member, Lynette xx



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cazza
5.00 (Excellent) | April 2008 | cazza
Re: Aspergers Syndrome - A long story cut short

Thank you for sharing this with us, and you all did travel a long road.. Your son is very lucky to have a family that helped him get through this as well, as what a difficult time for you all..

Children with Aspergs are very Intelligent children, and teachers need to be educated more on this area. instead of sticking a label on the child..

All the best with you and your son..

xx cazza



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      kez1969
April 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

alot of teachers in my sons high school were not supportive at all and treated him like a child that didnt want to learn. He was being bullied so much for being different that he didnt want to go to school and that is still the case, it is a struggle to get him to go. He has a good support teacher now but again she is starting to become a little casual. This is making it hard for him to get his grades back up.



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           cazza
April 2008 | cazza
Re: Aspergers Syndrome - A long story cut short

Yes thats why i said they need to understand, and learn more ...(teachers)

I really hope there is a break through for you all soon..

xx cazza



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MrsSanders
5.00 (Excellent) | April 2008 | MrsSanders
Re: Aspergers Syndrome - A long story cut short

Thankyou for sharing your Journey with us. My Husband has Aspergers, and is considered highly eccentric by those who dont know him, but he has excelled in his field and has been very proactive in finding way's to deal with his issues and stresses. Against all the odds and speculation, he is one fantastic father. May be a bit slow on empathy, but wow does he make time for his kids. I wish you and your son all the best on the road ahead.

Luv,Winnie.xx



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electrifying02
April 2008 | electrifying02
Re: Aspergers Syndrome - A long story cut short

great advice . i have heard of his but never knew about it

belxx



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ldybgsgma99
5.00 (Excellent) | April 2008 | ldybgsgma99
Re: Aspergers Syndrome - A long story cut short

I am so glad that you found out what the problem was.  Very good article. I wish you and your son the best.



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      kez1969
5.00 (Excellent) | April 2008 | kez1969
Re: Aspergers Syndrome - A long story cut short

thank you for your comment. Like i said in the article, there is alot i cant put into words, but it has been a long road not just for Dj but also for the whole family. Dj is an amazing child and he is now big brother which is is amazing at.

thank you again.



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