Thoughts please.... aspergers????

OK for a while we have thought our DS was a little quirky but figured all kids have their issues, I think today was the first time I realised that might be something really wrong. We had a few changes to routine today and he had a huge meltdown at gymbaroo as we normally have to rush and today we got there early but he freaked out because we weren't late.

Problem is 'most' of the time he is fine. He has some interesting POV and is unbelievably stubborn and likes to be right like most 4yos but then he has moments like these where we are left scratching our heads. My husband and I both think he has some tendencies similar to aspergers but he doesn't show the other classic sympotms (ie his language is very good but he does have a stutter and he loves being around others although he does choose to play alone maj of the time and relates to others on a different level? We are also very aware of what sets him off so I guess we compensate for him a lot by sticking to routines etc

Not sure if any of this is making sense but what should we do next??? I would really like to source some prof help to help him adjust better but I don't think a dr would think there is enought there for a referal. What are your experiences???

if you think that there is something there - then there is. If it is enough to worry you, then there is enough for a referral. Get a referal for him to be assessed through your pead and insist on it if needs be. Otherwise speak to his kinder teacher and see what they think. they may also have access through the public system for an assessment done at kinder
HTH and good luck

I am a child and adolescent psychiatrist and agree with odette- that if you are concerned then get an assessment of some sort. It may be within the "normal' range but it you are concerned enough to ask the question. In terms of where to go, I am in SA and do not know a lot about Qld health system but other options (odette has already suggested some good ones) would be talking to your child and youth health service, child and adolescent mental health service or Autism association (not sure if every state has one). We have Autism SA and despite the name it actually cover the spectrum of disorders including aspergers. Good Luck with navigating it all.

Thanks Odette - our kindy teacher has actually been talking to us but not in specifics, I think she has been waiting for us to break the ice. Might make an appointment to speak to them this week

Thanks Drgirl - I was thinking about going and seeing child health, might give them a call just to have a chat.

Jelvie

Thank you so much for your post it rang so many bells. I never realised how disengaged DS was as a baby until I noticed how interactive DD is. My DS can name every thomas train too and knows all the numbers and cannot understand why I get the blue ones mixed up all the time. He makes up his own words for things all the time and remebers them, even months after he labels them and is has an unbelievable number concept - has been able to add and subtract for nearly a year now.

We took him to the child health nurse early on as he was very obsessive about placement of things and routines but we were told not to be silly and it was just him being him. We too without even meaning too have fallen into keeping to his routines like making his lunch and making sure his yellow shirt is ready for Thursday and his green shirt for Fridays.

I admit I have been hesitating getting a referal as I don't want to label him and to have to cope with all the hang-ups that come with it but I would like to understand more about where he is coming from and how we can help him adjust so he can live a normal life. My nephew was diagnoised with Aspergers at age 3 and it is very severe, he is also very violent but I think the parentling structure has a lot to do with that and I really don't want to see DS follow down that track if at all possible.

I will def check out that book, thank you so much for posting about your experiences!

Aspergers is very often misdiagnosed as being ADD or ADHD and vise versa.

My eldest DS has ADHD and had a lot of the traits and quirks both you and Shannon have mentioned... he was properly diagnosed when he was 7, he has been medicated before, but is now learning to control his (destructive) behaviour without medication and with a lot of guidance from us and his school.

Hey Saram

Sounds like you have already got amazing advice from the women above...

I agree...get a referral to a Paediatrician...someone who specialises in ASD (Autism Spectrum Disorder).

In WA, to get the diagnosis you need to see a panel of professionals (Paed or Psychiatrist; Speech Pathologist and Clinical Psychologist). The Speechie and Clin. Psych need to be specialist assessors...like Lisa mentioned, one of the main roles of the assessment panel is to look at a variety of possible diagnoses...as alot of the behaviours kids present with could due to a number of reasons...

You could start with contacting Tony Attwood's clinic (the guy Jelvie mentioned...just google his name)...he's in QLD and is a world expert in Aspergers...hopefully they would be able to pass onto you some recommendations for you regarding who to see...

He also has some fantastic resources...does excellent parent workshops...and the book Jelvie suggested is excellent...I'm reading it at the moment...

Wishing you all the very best...

Jelvie - oh that thing with the lollypop stick is so Xander. He can also remember whole sequences of dialogue from movies so we really have to watch what he watches as some lines from childrens movies sound horrible when spoken by a 4yo out of context.

Monnie - thank you for that info, I'm going to go check out that clinic via google now.

Thank you all for all the info and advice. This is the first time I guess I've admitted to anyone else that there is something going on. It is so nice to talk about DS and hear about others quirkiness.

Saram,
My 10yo step son has Aspergers, as does my 29yo brother, and we suspect that my Man has it too. He had a lot of trouble growing up, and was often in fights, etc. One thing that Aspergers people do often is not know how to show or deal with their feelings and emotions, so when he was angry, it would just build and build until he exploded, usually with his fists. There are things he still has trouble with, mainly large groups of people, so we don't go to pubs and things like that. He thought for years that he had a hearing problem from sticking his head in engine bays of race cars and the like, but only recently figured that it is the Aspergers which prevents him from being able to concentrate on one sound or voice. My brother had trouble at school, as my mum was just sent away by the teachers. They would say "that's just how he is" and brush her off. He found a perfect outlet, computers. He can be 'anti-social' and it has all the formality that he thrives on, and has a great job in the field. He and the Boy get on great together, since they are the same.

What I initially just meant to write, was that I saw a book in the library that looked really good on the subject. Flicking through it, I hope to get around to borrowing and reading it soon. I am trying to go this arvo for something else, and if I find it, I will let you know what its called. I know that you may not have much time to read (who does? ;) ), but it may be worth a look.

If you ever want a quiet chat, just PM me.

Thanks Netix, I would love thename of the book if it does turn out to be good

we had a meeting with his teachers today and they are thinking maybe sensory perception (which often is a part of aspergers too). We start the whole dr circle next week just to see where he sits so we can find out ways to help him.

Hey Saram

Yep...I'm really glad you've got the process going too...well done!

I hope you get all the answers and support you need really soon.

I'm a Speechie who assesses and works with children with ASD, particularly in the area of social skills...so if you have any specific questions about the Speech Path. component of the testing...just let me know...

WIshing you all the very best!

Saram, I'm sorry I haven't been to the library yet. Steph had others ideas, as usual. As soon as I go, I will let you know.

Hello,
I am a mum of one DS with Aspergers (age 9) and a sister to an adult brother with the same condition. It is hard getting a diagnosis, it is harder getting treatment and it is hardest still to get our school will be your best help. Find a GP who knows what the condition is as a starting point, I saw 6 before I found one that even knew what it was.The main thing to remember is that a diagnosis is not going to change anything. You need to think of what outcome you want first. My son was always "different" didnt like cuddles, didnt like breastfeeding (but would drink breastmilk from a bottle) just wanted to be left alone. We tried kindy, daycare, and family daycare, we had assesments from various people at each, we paid for a pediatric behavioural specialist, we paid for a private phsychologist. It came down to a recommendation from the school and a referal from the doctor. I live in Qld as well so if you need any names let me know. Be patient it takes time for answers. Tony Attwood is the leader in the field but his waiting list is a few years long. There is plenty of other specialists out there. At the end of the day it depends on what outcome you want and need for you, your family and your child. Some medicate some dont some use mental health techniques some dont, we have done it all and have reached our own happy combo. It all comes down to what is going to work for you as a total. It is a never ending process. But it can be successfull good luck on your journey feel free to ask anything, I know the frustration and the tears.

Thanks 10longyears - I am lucky, I guess you could say - in that my SIL has a DS with diagnoised aspergers so she has been great to talk things over with.

we started the process off today with a trip to the GP which wasn't brilliant as we are still looking for a family GP so I am dr shopping at the moment and I can safely say the one I saw today WILL NOT be our chosen GP. I explained that I wanted a referral to a paed and started to describe why and all he wanted to know is if he was hyperactive, had trouble focussing(ie he wanted to write down ADD) I explained that his teachers and I had discussed the possibility of Aspergers to which he blankly ignored and continues to ask if he was hyperactive - I'll just add here that english was not his first language and I think he was struggling to understand what i was saying. Anyhow the result is a referal whcih is so garbled I am embarassed to give it to the paed.

It says RE: inappropriate behaviour in 4yo.
2yrs ago Inappropriate behavious. Easily upset and does tantrum if things are not done as used to be
1 month ago started aggressive behaviour against mother. Does not want to have hair cut.

WTF????

Anyway, I already had my paed picked out so hoping we can have more luck with her. Should I write anything down? In what format, will she ask questions? Will DS be in the room with us? He is very clever and knows when we are talking about him, how did you deal with this?

Thanks

Netix - no worries! I understand

Hey Saram

Don't worry too much about the GP's referral...they are often pretty dismal...

Yep...I would encourage you to write things down to take with you to the Paed. Mainly to prompt you...as sometimes it's easy to forget things. Also...sometimes it's really helpful to have a letter from a child's teacher, outlining her concerns as well...nothing huge...just in point form is fine...

Here's some of the things to have a think about...these are the sort of questions that the Paed. will probably ask...

Presenting problems:

• what are your problems you are seeing?
• how long have you noticed them?
• have they changed over time? got better? got worse?
• where/when do you notice the problems happening most? can you normally predict them or do they happen out of the blue?

Developmental history:

• what was your pregnancy like?
• what was the birth like? any complications?
• how was DS as a baby?
• what were his developmental milestones? sitting up? crawling? walking? talking? toilet training?

Medical history:

• any significant illnesses? fevers?
• family medical history?
• family psych. history?
• sleeping?
• appetite?
• allergies?
• medications?

Schooling history:

• how did DS separate from you when he started attending schooling?
• peer relationships?
• observations of teachers?
• academic progress?

ASD features:

• any odd quirks?
• unusual interests?
• ability to cope with changes in routine?
• ability to show emotions? ability to understand emotions in others?
• play and imagination skills?
• DS's use of language? vocab? style?
• sensory issues? responses to touch, noises, smells, textures, etc.?
• ability to show empathy?
• ability to make and keep friends?
• ability to relate to others?

Regarding whether DS is in the room, it depends on the Paed. Some like to do the interviews with kids present, some will have some time with you together, and then time with you and DS separately.

Perhaps when you make the appointment, ask what your Paed's preference is...also ask them what they recommend for you to tell DS about the appointment...

Wishing you all the very best!

I have watched my dear friend Mel and her beautiful boy who has aspergers flip like a coin for 7 years. Its a really chaotic condition which has its moments. Some months you wonder if the child we know is really in there anymore. Then for no apparent reason he comes back. I am not an expert I only know what I have learnt through my friend. I know he is on the most severe level 5 and that there are levels 1 - 5 (varying degrees of severity) and early diagnosis is imperative. Not only for the child but for mum and dad too. Just to know what you are dealing with and what to expect and importantly support. Please dont hesitate to get a proper diagnosis. You will have trouble just like Mel did she finally had a correct diagnosis after 6 years. He was constantly misdiagnosed as autism and ADHD etc etc. If you feel something is not right keep on the Dr.
Good Luck
K

Thank you Monnie, I am going to print that out for hubby and I to go through.

Thanks Kaylene - hope your friend has found some help now. My nephew is also assessed as level 5 so I know what you mean