Getting a diagnosis.

I haven't posted on BB for a while. But i feel like i have no where to turn. So here i am, asking the advice of you lovely ladies.

DS Charlie is 5. We are almost certain he has autism. We have an appointment with the GP tomorrow morning to get the ball rolling. I have had this appointment since last year. I hope this is not an indicator of how long it's going to take to get a diagnosis..

I'm scared. I don't know what to expect. What will happen tomorrow? Will she just give us a referal to a Paed and we go on from there?

Today was suppose to be his first day of big school. It didn't happen. We couldn't even get him out the door. The school knows about it all and are trying their best to come up with ways to help get him to school but nothing is working. Last year we tried while DD was at school. We were even planning on staying so he felt safe. He ran out of the grounds and onto the road just to get away :( I don't know how to deal with this. Did anyone else's child have this much trouble going to school?

Hi T! I don't have any experience of this, but just wanted you to know that I hope you do get some help for him. Getting the dx will open up so many avenues for help for him. I think how long it takes depends on where you are and the Doctors you see. I know some people in real life who have gotten a dx quite quickly and sometimes it can take a bit longer mainly because of waiting times between appointments. Good luck, and I hope it's not too long :hug:

Hi Antheia, sorry to hear that things are a bit tough. I was wondering which state you live in? If you are in Victoria, I can recommend a fantastic Consultant Paediatrician that specialises in children/teenagers with Developmental Delay (including Autism and Aspergers Syndrome) and behaviural issues, such as Attention Deficit Hyperactivity Disorder (ADHD), Anxiety disorder and other disruptive behaviural problems. She's at the top of her field and has been wonderful for us. I'm not sure how long her waiting period is as we happen to know her son, so we may have gotten in a little quicker than usual because of that.

As for tomorrow, I'm guessing your GP won't actually do much more than write a referral for you. Who the referral is written for will depend on who they recommend, or who you request it to be written to (similar to if you have a preference for Obstetrician and they will write is specifically to that Ob).

Best of luck with everything. I grew up with two brothers severely on the spectrum and now also have a step son that lives with us who is also on the spectrum, so my heart certainly goes out to you! ♥

No, we are in country NSW. Not much available here so i guess we'll get a referral to whoever is available.

My DS was diagnosed just after his third birthday. We saw community health and got a referral to the local child development unit. They did an assessment (ADOS) with both a speech therapist and occupational therapist. I took this to the pead along with a notebook of all DS' quirks and my concerns. After reviewing the ADOS and my notes DS was diagnosed with autism.

A diagnosis opens doors. Under 7s are eligible to the Helping Children With Autism funding. This is $12000 to be used with approved providers for therapy and therapy tools. The only catch is they must be diagnosed by their 6th birthday.

GL hun its a hard road but worth the recognition and help for you and your darling boy.

Just tried to PM you... can you clear your inbox?

Santosha, sorry! Have just emptied it :)

Doctor visit went ok. She said she thinks Autism. I have a referral to a child psychologist. Not sure when we can get him in yet. Waiting to hear back. But my doctor said it was urgent, so hopefully it's not too long. Not sure what to do about the whole schooling thing until then though :S I have been looking around and there is a school here that has an austism program but it's a catholic school and i don't really want to send him there. I have been thinking about homeschooling too which Charlie has said he is happy with.

I'm not sure how the system works in Australia as we've ended up having my son diagnosed and doing therapy in the states... but can you get started on any therapy before the diagnosis? We do floortime with our OT and I think it's fantastic. I just bought Engaging Autism to read up on it and it helps you start it yourself. The beauty of floortime is it recognises that the parent is a child's best teacher so it's really about educating yourself and using floortime in your daily life.

We are also recovering our son with the GAPS (gut & psychology syndrome) protocol, which I'd highly recommend too. I love that we're not just treating the symptoms, but the cause, and our son will actually be free of autism one day. He used to have severe anxiety and going anywhere was very hard for us too. He goes to a developmental preschool now and I have no problems leaving him at all. He rarely has anxiety these days.

Just got off the phone to the Psychologist. We have an appointment for 18th April. So about 2.5 months away. Not sure what i can do until then. I don't know what sort of therapy i can look at before a diagnosis..

If you can't start private OT or speech then perhaps start reading up on training yourself to do those.

And start GAPS ;)

Glad you got an appointment... bummer about the wait.

There's heaps you can do before you see a Psych but try not to get too overwhelmed by Google. Just pick one thing that you want to work on and start from there. Perhaps it could just be really thoroughly educating yourself and those in DS's life about autism (or, if you don't want to label it just yet, about his particular needs and quirks) or keeping a journal around any problematic behaviours such as sleep, eating, fears etc which will help the Psych.

Did you get my PM? More than happy to chat at more length if I can be of any help while you wait. xoxo

I have just been reading about GAPS. It sounds very interesting. I'll be reading more about it when the kids are all in bed.

I have found a local OT. I can self refer which is great. However i'll be out of pocket until i can get a diagnosis and funding.

Hi Antheia, sorry to hear of your difficulties. I have just been through this process myself. My son has had assessments before and he knows how to get through the assessment without diplaying any of the behaviours which we see. In the last 4 months we have been dealing with screaming tantrums which occur several times a day and last up to 2 hours. We waisted 6 weeks thinking that the psychologist we were referred to was going to do an assessment for ADD, ADHD, Autism, and Aspergers. When I rang the Autism line in SA they made me ask the psychologist for an exact date in which the assessment would take place, and we found out that he had to referr us on to someone else for the assessment. Been a long road for us and I am finding that all the little details are left for us to find out on our own, such as, not only do we need someone who specialises in ASD assessments, but we also need 2 assessments before the diagnosis will be enough to register for support.
I have just spent $600 on the first assessment and have anoter assessment on Tuesday which will cost another $500, so it is a very expensive road to take but in the end you will be able to access support. I know it differs from state to state too.
I still don't know whats ahead for us as we only got the diagnosis by phone today, so we are yet to receive a report and second opinion etc.
Just make sure they have specified that your appointment is for ASD assessment.