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

Sarah, it sounds like you're on the right track with looking for answers. Getting help to help your son achieve his full potential early is a key to a good outcome for him.

I've worked as a preschool teacher and have had a couple of kids in my class with their 'quirks' who I'm sure will be diagnosed with some PDD at some point but it's up to the parents. I've had my fair share of parents p***ed off at me for thinking I know their kid better than they do! In one case I actually spoke to the mum more dirrectly about it and she reqally appreciated it as she thinks she had been in denial that her son was anything other than quirky (not saying it's the case in your case). Her son is now getting the extra help he needs and is progressing marvelously. He should lead a really normal life whereas if his quirks had been allowed to continue and had just been accepted it may have been harder to 'change his ways' in the future to help him understand how society works.

She and I are now friends and can talk openly about it but it's hard when you're 'just' parent and teacher.

Good luck with it all!

Our specialists see us together and each of us seperatley eg: mum and dad alone and then DS alone. We find that way we all get our say and there are sometimes things that little ears dont need to hear. Qld no longer has assertainment levels, that system was changed early last year and only means something in the way the school gets extra funding and support, they now have an IEP and a few other completley confusing systems as a way of assesing there level of needs. We are in a public school that has a specialist unit for Aspergers children (yes they exist) we found there was more support at the public school than the private (who only seemed to want the "normal" easy children) Good luck finding a GP that understands. Mine just moved about a half an hour drive away and I'm still going to be driving to see him, it is to hard to find a new one. Does your SIL live nearby ask her who she sees??? How long is the wait at the place you have the referal too?? Hope not to long for you.

Saram, I finally went to the library today. The book I had to return was waaayyyyy overdue:redface:
The book I was thinking of is called The Aspergers Answer Book, the top 300 questions parents ask. By Susan Ashley, phd.
I hope it helps you, and I'm sorry it took me so long to get back to you with the info.

Thanks Netix - I am getting quite a library list :-)

Saram we are getting Matilda assessed through the Mater children's in Brissy & they made me write a letter with the "quirks" I saw in Matilda as well as any other day time carer so her family day care. I wrote mine on Friday & used the list Monnie gave you (thanks for that!). I'm so scared and nervous about putting a label on my girl. There is still a toss up as to whether it is sensory integration alone or high functioning Aspergers but we will see as time goes on. I think our wait with the hospital is 2 months :( so I have a lot of reading to do in the meantime as well.

Ok so yesterday we went to our paed appointment, we had a letter from his teacher (which was a little sad to read about him no mixing with others and some other skills that are immature) and we had the list monnie gave us filled out.

When we got in there she started of by saying she was going to have to run off to a caesar any minute but she was very apologetic. She gave him the once over then had to go so we had to wait for about 30min. By the time she got back DS was starting to get antsy as the other kids in the waiting room had unsettled him a little. She talked to us about a few f the things on the list and then asked us some questions from a checklist made for 2-3yo which was hard to think back as regards to his specific behaviour at that age. She then asked what we thought theproblem might be and we said we thought maybe aspergers or sensory perception blah blah

After listening to us she then told us that this is a psychological problem that she can't diagnoise and gave us a list of 6 different psycholgists???? I said that people we had spoken to (inc teacher) had said we would need to se OT etc and she said she is happy to write out any referrals we would like (OK???) and a brouchure on Autusim and alink to tony attwood site

Needless to say we left there feeling a little disappointed with no answers at all. DS lost the plot in the car and then fell asleep so all in all a great day NOT

Later that night at quilting I ran into a friend who's little boy has just been diagnoised with autism and she has recommend we she another paed who specialise in asd and aspergers. So now DH and I are stuck, do you go to the psychologist - we both think this could be beneficital for him but might be going about it back -to -front. or do we go and see this lovely dr who can give us answers on the day after speaking to us apparently??? which will mean a new referral and another $200. So confused. I am ringing the new practice today to see what they can tell me over the phone

I think if it was me I'd go see the other paed you've been recommended, is that where you are ringing today?
Do you get much back thru medicare (hey the fees might even be different)

Hey Saram

I'd go to the Paed. who specialises in ASD first...

It's really disappointing hearing your experience with the first Paed. Given that she doesn't specialise in ASD, I would probably not take too much notice of her recommendations. She really should have spent much more time with you. Unfortunately it really doesn't sound like she provided you with an adequate assessment...I can certainly understand your disappointment. Unfortuantely, it happens a little too often...

Are you signed up for the Medicare safety net? That should help...Also...if you do need to see a Psych. in the future, there is a new scheme out (Medicarre funded) which your DS may be eligible for. It enables him to access 12 sessions from a Clin. Psych. If you are interested, let me know what your e-mail is, and I'll send you a PDF of the medicare scheme details.

Wishing you all the best.

sarah: I forked out the money for the Psychologist ($480 for the first consult)and had no help other than to fund her new mercedes that she pulled up in when she arrived for the app. See the paed first.You do get a medicare rebate as well for the paed. Then maybe a psychiastrist not a psychologist. We get the psychiatrist covered completely be medicare we have never had to pay out of pocket for it. We just got a referal from the paed (that specialises in ASD) to a psychiatrist that he recommended.

christy: Dont answer if you dont want but who are you on the list to see at the Mater, we are part of the woodwork up there now. Started seeing them about 5 years ago for DS. I can give you a few recommendations if you need. Or a direct phone number. LOL. A personal email address.. GIGGLES

I rang the other paed office today and the first appontment we can get there is on the 15th of September so we are off to get aother referral tomorrow (thankfully got into a supposably good GP which would be nice) so we'll see how we go :-)

Christy - I know what you mean about not wanting to put a label on. It took so much emotionally to get to the first paed half of me wanting them to say it's nothing he'll grow out of it and the other half just wanting them to tell me it's blah and this is how we can help and then to walk out nowhere and to have to get up the nerve to do it all over again grrrr.

Thanks 10longyears - that's what I was worried about too, without a diagnoisis I think we would just be repeating ourselves and going around in circles between paeds and psyc.

Sarham,

I know this is from about a week ago, but I was wondering if you are in Sydney?

If so, I can highly recommend Dr. Antony Underwood. He is a paediatrician based in Pymble who specialises in autism spectrum disorder. We see him with our children for an unrealted reason (he is a homebirth supporter and is happy to see babies born at home for general checkups) but he is a lovely, gentle, and thorough doctor who is world-renowned as an expert in ASD.

Hope this helps...

Michael thats fantastic information to have. ANY paed who is is lovely, gentle and thorough is worthy of seeing.

10longyears... yes please. my email is christy7@bellybelly.com.au We are on the waiting list & just got pushed back to February. But in the meantime we've seen an allergist who through rigorous testing has found Matilda to be allergic to cows milk. She had around 25 viles of blood taken and we've found that she's allergic to cows milk, oats, banana and almonds and has low iron levels and her TSH (thyroid) isn't working properly. We are on a 6 week allergy free diet & some stuff to help her digest food and hoping that this may be the answer to her behaviour as well.

Christy - wow, that is really interesting, I was reading the other day about how food allergies can affect behaviour. How did you go about getting that testing done? How did she go with the blood test? We are concentrating on getting DS on a healthy organic diet just to see how it goes. It is such a battle though as he rarely eats anyway and is extremely fussy about texture. I notice DS is much less able to cope hen tired so I have always given him a multivitamin to help with iron levels

Schmickers - unfortuanately in QLD but that sounds like an amazing paed! One who is really in it for the right reasons!

Sarah, I was lucky enough to go to the food allergy expo and I went to a seminar about food allergies because my DD2 has food allergies from birth. I made an appt with the allergist for Jovie & while I was there he got into Matilda. He was very concerned about Matilda (she looses weight regularly too and we put it down to her being a very fussy eater) and did an enormous amount of tests on her. He knew what tests to run, I just let him do his thing, because as you are probably living it as well, any answer for this is welcomed.

Hi I just thought I would but in I will be really brief..

My son (9) has been diagnosed with aspergus syndrome, it took years of frustration to get the diagnosis. To cut a really long story short when ds was 2 I was at my whits end and somehow got onto food alergy's/aversions and behavour. I trialed a diet through Sue Dengate she wrote the book "Fed up" it took alot of really hard work I have to say and it was by no means easy but I did see a big improvement and discovered alot of foods and other external things that "set him off". One big trigger was milk which he now drinks soy and we stay away from other "triggers". We now get a bit of help through programs at school and help him through life by understanding what his problems are and how his brain works. Sounds strange but educating yourself about this condition is the best way to help your son. I was diagnosed with ADHD as a child wayyyyyy back when they only knew about hyperactivity and most people thought it was made up :lol: so I understand what he's going through and empathyse with him, there's just so much information out there these days so I hope you get the support you need :hug:

Oh also my son was totally obsessed with Thomas he's now moved onto Lego starwars and yep he's just as obsessed with it :rolleyes:

Hi joralyd,

Wow DS is into lego star wars too! Although his major obsession is Shrek 2 at the moment. He is contantly talking about pressing triangle square triangle to do this and square to blah blah balh :-) wel at least it is helping his fine motor skills and hand eye co-ordination :-)

Yes we have Xander on soy most of the time, I've found it is more when it builds up in his system , say if he has milk on his cereal, a milkshake at the shops and then the next day milk again wwe have a bad day but if we keep it at a bare minimum then it's OK - he isn't too fussed on soy so we have to get the flavouring and I wonder if the sugar will cancel out any improvements from the milk. I have been looking into that special cows milk A2 or something but haven't found a supplier up here for it yet.

All the best on your journey!

sarah

I think we were lucky that we got him onto the soy milk when he was only 2 because he now doesn't like the taste of cows milk. DS is the same it's the build up of certain foods that's the problem. Another big problem is the preservative they use in bread it took a long time to work that one out because of the build up factor arg it gets to a point though when you start thinking "is there anything they can have"!!?? I ended up after 18months of stricked diet control slowly introducing different foods and he seems to have built up tollerance to most things although we still have bad weeks atleast he can live like a normal kid. Have you heard of the "door' program? or better still neurothearapy(sp?)/bio feedback? I can vouch for the bio-feedback I used this treatment for axiety/depression I would still be on medication and struggling to cope with life if it wasn't for this.. google it if your interested and if you want to ask any questions about it feel free :hug: good luck with everything