so confused about Aspergers

Hi all,

I am writing this today in pure frustration and at the point of tears. My DS1 is 6 and we have thought for a while that he has had some funny quirks..

When he was at Kindy i spoke to the staff and they said perhaps we should look at getting him assessed for Aspergers. At first my world fell apart, i wondered why my little boy and then i thought about how he reacted around his peers and wondered how can I help him see the world isn't so scary..

Ok anyway to today.. I again brought up my concerns at his 5 yr old health check and was told he is very smart, he is talking to me etc nah i think he is fine... Then another nurse later that yr says to me hmm i think he may be on the lower end of the scale.
I then went to the Drs with my DD and took DS along, the DR actually asked me if he had autism etc due to the way he was playing but again it was left at that. I went back to DS dr who said he is too social, ask his teacher what she thinks so i did... She says to me no he is too social.. to vocal
So once again i leave it thinking well maybe he hasn't... Then this week it begins again, a trip to the dentist reveals he has ground the back of his teeth away, he received two detentions in two days, he refuses to make eye contact and actually cries when forced to.. and then he says a boy tricked him to climb into the urinal at school and kiss it..... He knows that kissing it will make him sick, he knows it is wrong but he cant understand why he did it.. I cant get through to him that this person who told him to do this is not a good friend.

I had a group of friends over on Friday who work with special needs children at kindergartens here... I was talking about Hamish at school and his behavior again and they turn to me and say you need to get him assessed.. One of these has known Hamish from a baby..

I am so confused and don't know where to go from here.. I feel like i have let my little man down

:hug: :hug: :hug:

I don't know where to start! So much of what you have posted sounds familiar.

You haven't let him down at all. There is nothing wrong with waiting a bit to see if the traits he displays is something he grows out of. I did exactly that till I decided I had to know for sure and took M to be assessed. It is something you need to be ready for. It is a shock but then it can be a relief too. Remember that once it's over he is still the same gorgeous little soul.

I've been there with more than one Dr that knew he was Aspie as soon as we walked into the room.

Too social and vocal and familiar with people. To the point of being an awful pest to complete strangers.

One of my dear friends breathed a sigh of relief when I told her of M's diagnosis because she knew but didn't want to upset me so didn't say anything. She knew him from birth.

:hug:

You need to get him to someone that actually knows. Everyone appears to be an expert these days :rolleyes: and it can be overwhelming with conflicting opinions from those that don't have a real understanding.

There are different ways of going about it I think - a referral to a Paed is next?

You haven't let your little boy down - it can be really hard to identify if quirks are a phase or just personality, just quirks, or more than that.

Don't kick yourself xoxoxo

I think go and have him tested. Their is a great book that explains aspergers...cvery basically to explain in to ppl....All cats have aspergers (its quite a funny book) there are some very very successful ppl with aspergers including bill gates.

Peopke with Aspergers can be very suceesfful and intelligent and very often are!! Just remember your son is your son he is who he is whether you have the diagnosis or not iykwim If he does have Aspergers and find out it will help you understnad some behaviours and help him also understand his thoughts and the way things make him feel!

Good luck!

:hug: :hug: :hug:

your not the one letting him down hon...all the 'experts' have let you down by seeing it and not helping you at all :(

Go back to your GP and demand a referal to Pead. The waiting list can be upto 6 months so the quicker you do it the better hon.

It is completely normal to grieve the child you thought you had hon and to feel lost, not in control and overwhelmed. There is so much outthere information wise that it can be so foggy.
Take a deep breath hon...yourve done so many wonderful things with him to try and get help..but when you have to fight for your child sometimes you need to scream to be heard. Get those lungs ready ;)
:hug: again dear lady

Thank you all ladies for your replies....
It means so very much to me.

:hug:

My Dad has aspergers, and we are yet to find a blood relative of his (including myself and my DD) who DOESN'T have some traits of autism, and many of us are on the spectrum. As it turns out DH seem to be an aspie too!

My friend's little boy is in the middle of being assessed for developmental delays and autistic traits. He is the same delightful little boy he always was (in fact he and i get on great because i REALLY get why those cars need to be in a line, in the correct spectrum order, and of course in order of size! LOL) and his assessment is only doing helpful things for him, in terms of how those around him are now able to help him where he needs help and understand him where he needs understanding.

I'm so sorry the other boys made your DS do what he did in the toilets. Being autistic, you kind of take people at face value. The filters that most people seem to be born with which say "that's a lie" or "question this situation" are patchy or missing. And it can be really difficult when someone is saying one thing but their face or body language is saying something else to figure out which is true, and because words are more concrete they seem to win out a good bit. Logical sense is comforting and illogical things can feel frightening and difficult.

DH and i were looking through some emoticon-type cards recently which our friend's son had been given and we were both shocked that even as normally-functioning people we could only concretely pinpoint what about 15-20% of the expressions on the faces meant, and some of those we "know" because we have learned them through internet use, not because we recognise them.

It's scary to take a breath and think "we need to do this now" but ultimately it doesn't change your son, it only tells you a little bit more about him. We read a novel recently "the curious incident of the dog in the night" which is written from the POV of a teenager with autism. It's not written BY an autistic person, but it does give a handy insight into how the world can look from inside an autistic-type mind.

Bx

Thanks Ladies once again..
Hamish is a loving child and always gives me the biggest hugs, but it always on his terms, you cannot go up to him and just hug him, he does not like others initiating the contact with him at all.. He is very bright and is doing very well at school academically. From a very young age he knew all his colours, shapes and numbers.
As a toddler his cars always had to be in a line and he became upset if they were not. He has relaxed on this now. I recall buying him a thomas the tank top and he refused to wear it as one of the numbers on the trains was not correct. By three he knew all the trains names, colours and numbers and could tell you what they were if you asked.
He was diagnosed with hyper sensitivity at around 8 months as i was concerned about the way he flung his arms backwards as a baby. He no longer does this but still does not like the toilet flushing the bath running or other loud noises, although he can make some himself :)
He is still not keen on shoes and socks and takes forever to put them on as they never fell right. He hates the tiled floor as it is too cold and he will refuse to walk on it bare foot

As i sit here writing this i know in my heart and head that my little boy needs some help... He is and will always be my little man and a loving boy ...

Awww, on the face of it, he looks like he has some of those superkid traits :D

If you can, look for a book titled "Not even wrong", I read it when trying to find answers about DS, and by the end of it if he was diagnosed on the spectrum I would have felt GOOD about it.

And come hang out in the chatter threads in here - it helped me HEAPS!

xoxoxo

You are defaintely not letting your little man down. You are a caring mother who is doing her very best.

Ive read some of your posts before and he does sound like a little boy I used to work with who had aspergers. He was diagnosed only at about 7 and half. Yet they were always saying something is not right here and getting in loads of trouble at school. This little boy was the most loving boy and very social, hence why he didnt fit all the tick boxes. I think there are some similar traits but aspergers children can be different in their own ways.

There are places like Asperger Services Australia which if a member, can allow you access to loads of resources. Although from memory there was a free forum as well with a parent and carer section.

As your from SA, have you contacted Autisum SA? The school should have done a referral for him BUT the school system (it its public) is very back logged with a lack of services.

Feel free to PM me if you dont want to make this public info.

Hi he goes to a private school.
I have a meeting on Thursday with the coordinator of the junior primary. Hoping she will get the school onto this as well for him. His teacher dismissed it and said to me oh do you really want him labelled and then said the school does nothing about it anyway but she is a whole other issue :)

Oh she SUCKS! It's not about labelling, it's about UNDERSTANDING. Grrrrrr

It's funny isn't it, how many misunderstandings there are about autism considering how much it's been in the news and so on recently! I know LOTS of autistic people who hug, many who are able to maintain great eye contact, just like any other condition the INDIVIDUALS are all different. My friend's wee boy is very cuddly and you can walk up and hug him, but my own DD not so much, she will hug eagerly if asked first but wriggles away and complains if she doesn't get a request/warning. And sometimes she'd much rather high-five than cuddle. It makes those cuddly moments that much more special :)

My DD also has noise sensitivity, which is improving in some areas (can just about stand the hoover without screaming now) but worsening in others (the SIGHT of a hand-dryer sends her running from public loos before she's done a wee). She doesn't like pants and spends as much time as possible (including in public, which is getting tougher since it's November in Scotland and she is tall and looks about 5 rather than 3) wih her bum out...

The teacher sounds like a piece of work! You'd think she'd be more than happy to help such an academically able student in any way she could! Lulu's right, understanding makes a huge difference. I would say the one thing that has set me up to feel so little concern about how DD is is my previous understanding. I never think "why is she acting like this?" because i know why, and it's usually within the realms of "normal to me" too. The major issue we have right now is that she is VERY sensitive to other children screaming, and he wee autistic friend screams when he is distressed. She hand-flaps and rocks but doesn't scream, unless he screams, then his mum and i hug our respective screeching kids and just look at one another like "oh my god, not again!" lol.

Bx

My DD1 has high functioning autism. She hugs now, she avoids eye contact with people she doesn't know, and sometimes with those that do. Her autism affects her sensory integration and her emotional regulation. Matilda has lower communication, but is able to communicate with us well. She loves school but doesn't interact socially very well, she doesn't understand some of the imaginative play and prefers to follow a script.

I think as a Mum of an Autistic, I want to provide her the best opportunities in life. I want her to not get so frustrated when the world doesn't align the way she wants it too. I want to help her understand that and help her have tools in order to function.

I was definately anti-label for a long time, but I decided to let myself go, and get her the tools and support SHE needs in order to have a less stressful time in life. YKWIM? This isn't about having a label (although it is helpful for family and friends understandings.... and to chuck it at the horrible people in the shops who have to comment on her behaviour) its about getting access to heaps of resources that help them deal with sensory issues and psychological issues that come up living in a world within a world.

I wish you well on your journey, come and join us in the chatter thread and hopefully we can help you in sharing our journeys.

Ditto to what everyone else has said.

My first stop with my son was the community health centre through the local council who put us on to a paed. who specialises with ASDs and SPD (sensory perception disorder) and an early intervention centre.

Even if he is not diagnosed with a condition, it does sound like he could benefit from some occupational therapy and they can give you some strategies to deal with his sensitivities.

My son used to hug like a robot with stiff arms but now he seeks deep pressure and wants to hug a lot ! And be wrapped up and wear long sleeves and pants in 40 degree heat. He freaks out at shorts and tshirts. A lot of people poo-pooed me when I said I was worried about my son, including his father! but I went ahead and am so glad I did.

If he is diagnosed with something, you may be entitled to some funding from the federal government.

If there is a paed. that has been recommended to you, find out how long to get in to see them and then tell your GP that's who you want to see.

Good luck.

Hi

Again ditto to what everyone has said here already and double ditto to popping over tot he autism/sensory integration chat thread it's a great place to hang out and chat with others who know where your at.

It took a long time to get my DS diagnoised and it was the best thing we ever did but it was not an easy road and I get sick of having to stand up anf force the issue and argue with stupid people who think they know autism and my son after 10 min.

We first took DS to the child health nurse at 2 when he wasn't speaking and had some strange obsessions - we were told we were being paranoid and not to worry. years went on and finally his kindy teacher suggested we see our dr.

Our GP didn't really believe there was an issue, the first Ped we saw suggested we download some checklists on the internet and come back. We saw another ped who told us Xander has traits but was not autistic and said if we needed help at school he would tick the PDD box so we could get some funding. His teacher suggested we get him to do that so that Xander could get some support at the same time we sawThrough Gymbaroo - who witnised one of DS breakdowns after we were 10 min late we saw an OT. She spent 3 hrs with us and Xander and told us in her opinion Xander has Aspergers. She wrote a detailed report to the ped and also told us to get the school to do the same - DS went to this appointment in his usual form and this time after 15 min we walked out with a diagnoises of Aspergers - he couldn't wait to get us out of his room. He also told us he saw no reason for us to come back - nice!

DS does not have all the classic autistic traits all of the time. He does talk now - a lot. Infact you can't stop him but he rabbits on about his little obsessions and tries so hard to play with the other kids but they just don't get him.

Autism and aspergers are such variable things, every kid is different and demonstrates their needs in differnt ways. Unfortunately many teachers and even some dr are too busy to really see the variences in kids also we as parents don't want to sit there and rave on about the unfavourable things our kids do to dr and teachers I think often try to protect us from the truth about how our kids are coping at school or perhaps they just are too busy to notice??? We have had terrible troule with DS teacher who has no idea about Autism and what DS stress signals aredepite all the info and mettings we've had - drives me batty.

He does have a lot of social problems with school as he so badly wants to fit in which makes him the target of bullies that get him to do things and play games that he shouldn't but he also responds well to rules so we work with him on this and the special needs teacher also sturctures play time at breaks to help him

We have had such a huge improvement since DS has been diagnoised with the help of OT and just knowing a little bit more about what goes on in his head and why he does what he does. We can also avoid or redirect thigs that trigger his meltdowns.

If you do want to go down the diagnoises route, gather up all your observations and notes from others - it sounds horrible but you may have to fight to get an answer which can be so hard when you yourself aren't really sure. I wish these dr would get it through their heads that us parents don't stand around coming up with things to be wrong with our kids and that we wouldn't go through all this if we didn't really think something was up!!!

Finally - you are not letting your little boy down - you are an awesome mum and doing a great job!!