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2.5 year old just diagnosed with ASD... struggling


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#1 muminmelbourne

Posted 10 June 2019 - 11:57 PM

Hello everyone,
I have been a lurker in this forum for years as I have been worried about my son's development since he was 10 months old. When I voiced my thoughts to family, friends, the MCHN, the GP, speech therapists, childcare educators and even two pediatricians they all dismissed my concerns with the usual lines...

Admittedly he would make progress, although slowly so I comforted myself that 'every child is different and develops at their own pace'.

Deep down I always suspected a problem however when multiple professionals tell you everything is fine you start to believe it.

Receiving the diagnosis last week has turned my world upside down. I know I SHOULD have been prepared for it however I am having a lot of trouble accepting it. I burst into tears all the time. It is the first thing I think about when I wake up and the last thing I think about before I fall asleep. When my son asks me to hold his hand, or cuddle him I feel physically ill. I am terrified for his future. I feel angry when I see him unable to do the many things his peers are easily doing. Mostly, I am angry at myself for feeling this way. I hate myself for falling apart at this time when my son needs me most. It is not his fault.

My partner is devastated too however he is taking it much better than me. He is accepting of my current terrible behaviour however I know his patience will not last forever.

I had so many dreams and hopes for my son and I feel they have all been shattered. I have no motivation to do anything at all these days as I don't see the point.

If you have read this far, thank you so much. I know I am a terrible person however in between my grief I do have moments of clarity where I will furiously research interventions and methods to help him with his life.

He has been diagnosed as level 2 on the spectrum. His main issues:
- initially speech delay however with therapy can now label a lot of objects (he can say 'mama', 'dada', 'mama cuddle' but it's really to label us only, never to get our attention like NT kids)
- not much functional play and cannot expand on play ideas. (eg shows me a dinosaur and says 'dinosaur!' however if I grab another dinosaur and make it stomp around and roar and invite him to join he will not know what to do)
- repetitive play (every food toy he sees he will label and then say 'hot!' but unable to expand on the idea of the item being hot other than just blowing on it a bit)
- social reciprocity (eg when I went to pick him up at childcare another child said "[name], your mum is here!" and he just continued to play with the toys. Another example is when the educator is addressing the class EVERY SINGLE child turned around except for my son)
- does not answer questions appropriately ("what do you want to eat?". "dinosaur!" while holding up his dinosaur)
- does not read emotions well. He can tell when I am happy and when I pretend cry however if I am angry and yell he will laugh

To an outsider, it is not obvious he might have issues as he does not have any obvious stims, does not line objects up, is okay with changes in routine, points, has shared attention (shows objects and labels them), gaining lots of words (mainly nouns), knows his ABC, can count to 20 however it is really the quality of his interactions that are different.

For other parents who have ASD kids, I have a few questions if it is ok:

- We have been doing ABA therapy for about 4 months (started it before his diagnosis). Currently doing 14 hours a week and I have seen improvements in his speech, eye contact and response to name. How many hours of ABA did your kids do, for how long, and what kind of results did you achieve?

- He is currently attending 2 days of childcare. Should I take him out of childcare to add in more ABA hours? I have read the optimal is 20+, or every 30-40 hours a week? I am not sure how much he is gaining from childcare as he just seems to be doing parallel play and given no tantrums or behavioural issues I believe he is one that may fall through the cracks.

- Is it really possible to learn play skills and social skills through therapy?

- I have called around for social skills group classes however most do not cater to his age group and are for older kids. Are there any providers in Melbourne who are able to run these classes for 2.5 year olds?

- What is the optimal combination and hours of therapies/activities per week for an ASD child?

- What would be a good place to seek a nanny with some experience and background in ASD to play social and turn taking games with him? I am thinking maybe a university job board targeting psychology students..

- Are stories like Jack Exkorn ever possible?

- What are the steps I should take to seek some help for myself? Are there any recommended counselors in melbourne I should speak to?

If you have read this far, thank you so much. I am completely lost and devastated and would really appreciate some guidance.

#2 Odd-1-Out

Posted 11 June 2019 - 12:14 AM

Hi, I cant answer most of your questions as I live in another state and am new to all of this also. There should be an ASD or special needs parents group that meet up in your area. The ones in my state are called "Time Out" not sure if they are called the same in Vic.

I can relate to so much you are saying.Take comfort in the fact that your little one is at least labelling things, my boy who is 3 has never called me mum or anything for that matter 🙁

Someone reccommended I get a referral from the GP for 10 councelling sessions to talk through the diagnosis, I havent done it so not sure if it will help you?

Sorry im not much help (((hugs)))

#3 22Fruitmincepies

Posted 11 June 2019 - 12:44 AM

You are not a terrible person, you are an amazing mum! You knew that your DS needed more help, and despite the fob-offs, you pushed and have an answer. You’ve found out when he’s still really young, and you are getting him help. You are amazing.

(I have no practical help, and no experience of your situation, but I hope you get some support while you support your DS)

#4 muminmelbourne

Posted 11 June 2019 - 01:12 AM

Thank you guys. I am furious that I did not listen to my instincts and do something sooner. I contacted the ABA centre when he was 1 and they said they can take on kids that young however family and friends said I was being ridiculous ( ABA is VERY expensive). That is over 1.5 years of wasted time that he could have been getting help.

Will getting a mental health plan show up in my medical records forever?

#5 Odd-1-Out

Posted 11 June 2019 - 01:26 AM

Im not sure? Do you have the My health record or did you opt out?

#6 Paddlepop

Posted 11 June 2019 - 01:30 AM

 muminmelbourne, on 10 June 2019 - 11:57 PM, said:

Receiving the diagnosis last week has turned my world upside down. I know I SHOULD have been prepared for it however I am having a lot of trouble accepting it. I burst into tears all the time. It is the first thing I think about when I wake up and the last thing I think about before I fall asleep. When my son asks me to hold his hand, or cuddle him I feel physically ill. I am terrified for his future. I feel angry when I see him unable to do the many things his peers are easily doing. Mostly, I am angry at myself for feeling this way. I hate myself for falling apart at this time when my son needs me most. It is not his fault.

My partner is devastated too however he is taking it much better than me. He is accepting of my current terrible behaviour however I know his patience will not last forever.

I had so many dreams and hopes for my son and I feel they have all been shattered. I have no motivation to do anything at all these days as I don't see the point.

If you have read this far, thank you so much. I know I am a terrible person however in between my grief I do have moments of clarity where I will furiously research interventions and methods to help him with his life.

You are not a terrible person. You are experiencing a completely normal grief reaction to your son's diagnosis.

You'll go through the seven stages of grief. It will probably take a few months as a minimum to process it. Yes, your hopes and dreams for him have been shattered. As painful as it is, you need to accept that they're over and in time you'll create new ones. It might take a while but slowly it will happen.

You don't need to try to solve everything and get all the early intervention all in place all at once. It's okay to take some time to breathe and process things.

Your little boy is still the little boy that you love and adore. He's still the same. My DD is still the gorgeous funny crazy cuddly little girl she was before diagnosis. She was diagnosed with ASD 5 years ago. Now we have a name for why she struggles with things that other children find so easy, and the diagnosis allows her to access support and assistance at school. The diagnosis helps us to understand her and interact with her in a way that is more suited to her, and to help us work out what areas she needs assistance and therapies.

The mental health care plan will show up in your Medicare record because the appointments are billed under certain Medicare codes. I don't know if a health professional can access your Medicare records without your consent. Anyway, they'd need to know the codes to know that they're connected to a mental health care plan.

I can't help you with ABA or Victoria questions. We didn't do ABA and couldn't have afforded it anyway, and I'm in Qld.

Edited by Paddlepop, 11 June 2019 - 01:30 AM.


#7 Caitlin Happymeal

Posted 11 June 2019 - 05:43 AM

ABA wasnt for us but our most intensive and useful early intervention therapy came from OT. But my nephew benefitted from an ABA based program - will PM you as might be too identifying.

#8 PhillipaCrawford

Posted 11 June 2019 - 07:03 AM

https://spectrumjourneys.org.au/

This group may help. Started by parents who wanted to exchange ideas about therapies and specialists. They are based at Chirnside Park

#9 muminmelbourne

Posted 11 June 2019 - 08:40 AM

Thank you everyone for the replies. Please keep them coming. Has anyone’s LO attended the la trobe ASD day care? I am now considering putting him in a structured targeted day care setting for ASD kids rather than one on one therapy. Does anyone have any experiences?

#10 ilovethebeach

Posted 11 June 2019 - 03:38 PM

Hi, I just wanted to say I'm thinking of you. My ds was diagnosed with the equivalent of add level 2 a decade ago when he was 2. They painted a worrying picture, would need an aide in school you have to send him to a public school he may not function as and adult etc. Well he had early intervention, it, st, social skills, creche 3 days a week no and though. He has functioned fine. He didn't need funding at school. In year 8 in private school now he just needs some extra concessions like using a keyboard instead of handwriting in exams, he does have a tutor in English and maths and his marks are above average. I think he's a testament to early intervention. One thing I did want to say is look after your mental health, I was devastated with the diagnosis and worried for his future, we had little family support too. Please make an appointment even with your gp as now you need to be at your best to support your family and you need to be looked after too. Pm me I can give you the name of a psychologist that runs social skills groups for different ages.

Edited by ilovethebeach, 11 June 2019 - 03:40 PM.


#11 muminmelbourne

Posted 11 June 2019 - 04:22 PM

 ilovethebeach, on 11 June 2019 - 03:38 PM, said:

Hi, I just wanted to say I'm thinking of you. My ds was diagnosed with the equivalent of add level 2 a decade ago when he was 2. They painted a worrying picture, would need an aide in school you have to send him to a public school he may not function as and adult etc. Well he had early intervention, it, st, social skills, creche 3 days a week no and though. He has functioned fine. He didn't need funding at school. In year 8 in private school now he just needs some extra concessions like using a keyboard instead of handwriting in exams, he does have a tutor in English and maths and his marks are above average. I think he's a testament to early intervention. One thing I did want to say is look after your mental health, I was devastated with the diagnosis and worried for his future, we had little family support too. Please make an appointment even with your gp as now you need to be at your best to support your family and you need to be looked after too. Pm me I can give you the name of a psychologist that runs social skills groups for different ages.

Thank you, I have PM you.

Edited by muminmelbourne, 11 June 2019 - 04:23 PM.


#12 mayahlb

Posted 11 June 2019 - 04:29 PM

I just wanted to say it’s normal to feel like you do and you are not a terrible nun. I knew from 18 months-2 years with my son that something wasn’t “right” but he didn’t get a diagnosis until he was 5. His diagnosis was level 2 ASD.

I can’t answer the ABA questions or the VIC questions, it wasn’t for us, it doesn’t follow an err philosophical viewpoint that I agree with. (I’m almost certainly on the spectrum myself). On the question about daycare and swapping it for more therapy hours I would be wary of this. You want him to have time where he is interacting with peers even if he doesn’t seem to be understand it or acting neurotypically. It’s also in a way downtime. While early intervention and therapy are good, there comes a point where you need to look at if you are doing therapy or if you are letting him be a child. I’m sorry if that offends anyone. It’s also not just about his capacity it’s about yours as a family. Therapy can be exhausting for everyone involved.

Downtime and periods of minimal therapy are actually where my child made the biggest gains. It was where it all came together. OT and speech were the main areas that provided success and support. (My son didn’t have functional speech until 4).

I just want to say the doom and gloom of diagnosis at this point is not a prediction of the future. My child described in his diagnosis report is nothing like the child you see today. A lot of that was by targeted therapy, supporting his strengths and watching him grow into himself. But it was also about letting him be a kid and taking advantage of his interest and fostering his self development just like any other child. Yes at 10 he still needs support, but most of his support is fortnightly psych to help with anxiety and speech therapy to help communicate and his literacy level (he has dyslexia and dysgraphia as well). I won’t say I don’t worry about his future because I still do, however if I’m perfectly honest none of my future worries are actually related to the fact he is autistic.

He’s at a state school. He went to normal daycare. He has friends. He’s found a group of kids who accept him for who he is and more importantly at this point in time he accepts who he is. He’s funny, kind, and accepted.

I’d recommend the parenting spectrum podcast if you haven’t already heard of it. https://www.abc.net....nting-spectrum/

I also really like Dairy of a Mom on FB. It took me a while to understand her philosophy but I found it very useful to reframe what I felt was happening.

Practical wise Autism Discussion Page (FB) has some brilliant tools for framing behaviours. https://m.facebook.c...discussionpage/

I also found that the book The explosive child very helpful. https://www.booktopi...0062270450.html It isn’t necessarily about ASD but so very many of the ideas and strategies in is work for ASD children. I struggled a bit because my child doesnt and didn’t respond to things like sticker charts or time out or time in etc etc etc (tried pretty much everything).

Edited by mayahlb, 11 June 2019 - 04:30 PM.


#13 muminmelbourne

Posted 11 June 2019 - 04:34 PM

 mayahlb, on 11 June 2019 - 04:29 PM, said:

I just wanted to say it’s normal to feel like you do and you are not a terrible nun. I knew from 18 months-2 years with my son that something wasn’t “right” but he didn’t get a diagnosis until he was 5. His diagnosis was level 2 ASD.

I can’t answer the ABA questions or the VIC questions, it wasn’t for us, it doesn’t follow an err philosophical viewpoint that I agree with. (I’m almost certainly on the spectrum myself). On the question about daycare and swapping it for more therapy hours I would be wary of this. You want him to have time where he is interacting with peers even if he doesn’t seem to be understand it or acting neurotypically. It’s also in a way downtime. While early intervention and therapy are good, there comes a point where you need to look at if you are doing therapy or if you are letting him be a child. I’m sorry if that offends anyone. It’s also not just about his capacity it’s about yours as a family. Therapy can be exhausting for everyone involved.

Downtime and periods of minimal therapy are actually where my child made the biggest gains. It was where it all came together. OT and speech were the main areas that provided success and support. (My son didn’t have functional speech until 4).

I just want to say the doom and gloom of diagnosis at this point is not a prediction of the future. My child described in his diagnosis report is nothing like the child you see today. A lot of that was by targeted therapy, supporting his strengths and watching him grow into himself. But it was also about letting him be a kid and taking advantage of his interest and fostering his self development just like any other child. Yes at 10 he still needs support, but most of his support is fortnightly psych to help with anxiety and speech therapy to help communicate and his literacy level (he has dyslexia and dysgraphia as well). I won’t say I don’t worry about his future because I still do, however if I’m perfectly honest none of my future worries are actually related to the fact he is autistic.

He’s at a state school. He went to normal daycare. He has friends. He’s found a group of kids who accept him for who he is and more importantly at this point in time he accepts who he is. He’s funny, kind, and accepted.

I’d recommend the parenting spectrum podcast if you haven’t already heard of it. https://www.abc.net....nting-spectrum/

I also really like Dairy of a Mom on FB. It took me a while to understand her philosophy but I found it very useful to reframe what I felt was happening.

Practical wise Autism Discussion Page (FB) has some brilliant tools for framing behaviours. https://m.facebook.c...discussionpage/

I also found that the book The explosive child very helpful. https://www.booktopi...0062270450.html It isn’t necessarily about ASD but so very many of the ideas and strategies in is work for ASD children. I struggled a bit because my child doesnt and didn’t respond to things like sticker charts or time out or time in etc etc etc (tried pretty much everything).

Thank you for this. I will look into those resources. In regards to the daycare I am in two minds as well. On one hand they say the more intervention hours the better but I do agree that I do need to let him be a child. I am just scared and worried I am wasting precious time.

How many hours of OT and ST did your son do? how long before you saw any change? My son can label things and follow some simple instructions however when I ask him questions he just doesn’t seem to get it.

#14 mayahlb

Posted 11 June 2019 - 04:55 PM

He did mostly speech from 18 months until 7. 25-30 sessions a year. Basically we did blocks of 10 weeks then would take 6-10 weeks off then another block of 10 weeks of 1 hour a week with homework. OT we did blocks of 5-6 (once a week) sessions once a term. He also saw a play therapist for 2 years from 3 who helped with anxiety and emotional regulation. We had HACWA funding after his diagnosis around 5 and we bumped up the OT to work on emotional regulation and fine/gross motor skill issues.

We also did play group with structured scaffolded play, twinkle toes toddler dance, rhyme time, kindergym (basically a giant aircraft hanger at the PCYC with mats and trampolines, push toys, obstacles course type things to help with gross motor skills), toddler soccer, PECS cards to help with communicating without speech. He started 4yr kindy when he was 4 (he’s a December baby). Most of the therapy was about teaching us as parents to take situations and opportunities to facilitate communication and development in areas of things like play. While the therapy hours were solid I often think the incidental had a great deal more impact then is realised. I certainly know being presented with a brother made a huge impact (my youngest was a bit of a bulldozer when it came to demanding he be played with and communicated with) and then doing kindy also made an even bigger impact.

I also think it’s important to look at what you are trying to do. Not every autistic child needs the same approach. My son did hours upon hours upon hours of speech therapy. But his speech issues is not necessarily because of autism. It fits the profile of verbal dyspraxia more closely. My niece who is also autistic (and symptom wise “worse” ins one ways) didn’t talk at all until she was 2.5. And then she started talking in full sentences. My son struggled with even pronouncing his name until he was 6. Planning out how to say a sentence longer then 2-3 words took years. He always made progress but it took time. He’s still considered “behind”.

Edited by mayahlb, 11 June 2019 - 04:59 PM.


#15 muminmelbourne

Posted 11 June 2019 - 05:25 PM

 mayahlb, on 11 June 2019 - 04:55 PM, said:

He did mostly speech from 18 months until 7. 25-30 sessions a year. Basically we did blocks of 10 weeks then would take 6-10 weeks off then another block of 10 weeks of 1 hour a week with homework. OT we did blocks of 5-6 (once a week) sessions once a term. He also saw a play therapist for 2 years from 3 who helped with anxiety and emotional regulation. We had HACWA funding after his diagnosis around 5 and we bumped up the OT to work on emotional regulation and fine/gross motor skill issues.

We also did play group with structured scaffolded play, twinkle toes toddler dance, rhyme time, kindergym (basically a giant aircraft hanger at the PCYC with mats and trampolines, push toys, obstacles course type things to help with gross motor skills), toddler soccer, PECS cards to help with communicating without speech. He started 4yr kindy when he was 4 (he’s a December baby). Most of the therapy was about teaching us as parents to take situations and opportunities to facilitate communication and development in areas of things like play. While the therapy hours were solid I often think the incidental had a great deal more impact then is realised. I certainly know being presented with a brother made a huge impact (my youngest was a bit of a bulldozer when it came to demanding he be played with and communicated with) and then doing kindy also made an even bigger impact.

I also think it’s important to look at what you are trying to do. Not every autistic child needs the same approach. My son did hours upon hours upon hours of speech therapy. But his speech issues is not necessarily because of autism. It fits the profile of verbal dyspraxia more closely. My niece who is also autistic (and symptom wise “worse” ins one ways) didn’t talk at all until she was 2.5. And then she started talking in full sentences. My son struggled with even pronouncing his name until he was 6. Planning out how to say a sentence longer then 2-3 words took years. He always made progress but it took time. He’s still considered “behind”.

It sounds like quite a journey. I think I will try and find an OT in Melbourne to work with him first. We have done speech before however I found ABA to be much better for his talking, although he is just stuck in the labeling phase for so long.

Is your younger son NT? I would love more kids however now I am unsure as I read siblings will have a higher chance to also be on the spectrum.

#16 mayahlb

Posted 11 June 2019 - 05:35 PM

Err no, my younger son has fairly severe adhd combined. And is bright but sometimes finds it hard applying himself. In saying that we mostly cruise along with him. If anything he’s more of the quirky oddball then my oldest.

But mine and my husbands genetic history likely has a lot to do with it. In likely adhd/asd. My husband displays a lot of asd characteristics and has a learning disability, likely dyslexia related. He has more then 1 cousin who has adhd and if his brother isn’t autistic I’d be massively surprised. His nephew is autistic. Both my nieces are autistic as well as a number of cousins and my mum’s family has always been known as “eccentric”. 3 for 3 of my siblings have dyslexia. So the likelihood of my kids being NT was low. It’s my norm though and I grew up with lots of people on the spectrum or different so I guess that influences me.

I’m pretty sure the chances of an asd sibling without my sort of generic history is between 10-25%. I’ve know a lot of people who only have a single child with asd and 3-4 without.

Edited by mayahlb, 11 June 2019 - 05:36 PM.


#17 *bucket*

Posted 11 June 2019 - 08:06 PM

Sorry, very long.

My DS was diagnosed at 4, but we "knew" when he was about 18 months old and I saw a copy of the ChAT (Checklist for Autism in Toddlers, this was a long time ago and I think there are different tools now). DS was already in early intervention then so there was no urgency for a diagnosis, so we waited a while before we proceeded. No funding back then so it wasn't going to make any difference until we were looking at school. Even so, actually hearing the diagnosis was devastating. We wanted him to be "normal". But he was still him, and the diagnosis didn't change him.

DS basically had 6 weeks of OT, then 6 weeks of speech, one hour each session, for a few years, age 1-6. He also has motor dyspraxia so struggled a lot with physical skills. He put two words together for the first time at 2.5. He had little functional speech for a long time and we used a few Makaton signs, but he didn't really get the whole purpose. He did Kinder Gym for a year, age 4 (not that good, the teacher didn't realise he couldn't jump until term 4), and seemingly endless swimming lessons, age 3-12 (he still can't swim, but they were good for him, and he had a brilliant teacher).

Toilet training was a nightmare and he wasn't fully independent until 15. He doesn't really have friends although found a few people to hang with later in secondary school. But he never saw them out of school - the look on his face when I suggested this was priceless. I don't think it had occurred to him that they existed out of school.

DS did two years of daycare, then attended sessional kinder for three y.o. and four y.o. He never attended before or after school care as he wouldn't have coped with another, different group of kids in his day.

DS was funded through primary school. We used the money for aide time, speech therapy, OT and Physio (at different times). We didn't do any other therapies out of school, but did practice his skills. A couple of social skills groups, but they didn't really help as he didn't "get" being social. He generally paced at break times at school - it calmed him - and didn't need people to talk to.

No significant funding at secondary school, but he did get a little which was used on OT, and he had a lot of support from staff. We chose a school that was small 7-9, but bigger 10-12 and were very happy. Successfully completed VCE (with accommodations such as rest breaks and his own room for exams). Successfully completed Uni (similar accommodations). Now has an IT grad position job. It wasn't easy along the way but he has done tremendously well. His work knows his diagnosis and makes some accommodations, but mostly he does his job like everyone else.

He is our oldest. DD has autistic traits but not enough for a diagnosis (might be different now there is more awareness of ASD in girls and differing presentation, but she functions quite well and doesn't have any need for a diagnosis, she may choose to pursue this later). Other DS we are currently grappling with diagnosis. His psychologist says he meets the criteria but we are concerned as to whether it would make a positive difference for him. So, yes, we do kind of have more than one kid with issues, but we went ahead and had more, even knowing the first had problems.

Not sure that this answers any of your questions, but wanted to share our story and give you some hope. DS didn't have masses of therapy, whatever you can do helps. Most of my experience was with a different system, different funding and so not directly relevant for the specific questions.

#18 Chaotic Pogo

Posted 11 June 2019 - 10:15 PM

The fact that you are pushing to seek more information the very day of diagnosis shows what a great mum you are.

You are allowed to grieve. Not for the child you have, but for the future picture you had in the background of your mind about how life would turn out for everyone. It will be a different picture and a harder path both for you and for him. But he is still your same little boy.

The evidence based research  says 20 hours per week. 14/15 just doesn’t have the same impact, it’s like there is some kind of threshold you cross where it all gets more effective. IMHO you are better to do intense then have a break, that to spread out at a lower intensity of 10 to 15. That’s from both the research and from personal observation of my 2 kids that did ESDM. By break I do not mean complete cut, but a drop back to a couple of hours speech therapy and OT.

People, including NDIS planners, will tell you NDIS does not fund intensive intervention of 15 to 20h per week. They do. They just don’t want to. You have to be very determined, insistent and informed, with lots of paperwork and reports from your team of professionals to back you up.

I will always regret we missed that wonderful 2yo window for intensive for our eldest.

#19 muminmelbourne

Posted 11 June 2019 - 10:31 PM

 *bucket*, on 11 June 2019 - 08:06 PM, said:

Sorry, very long.

My DS was diagnosed at 4, but we "knew" when he was about 18 months old and I saw a copy of the ChAT (Checklist for Autism in Toddlers, this was a long time ago and I think there are different tools now). DS was already in early intervention then so there was no urgency for a diagnosis, so we waited a while before we proceeded. No funding back then so it wasn't going to make any difference until we were looking at school. Even so, actually hearing the diagnosis was devastating. We wanted him to be "normal". But he was still him, and the diagnosis didn't change him.

DS basically had 6 weeks of OT, then 6 weeks of speech, one hour each session, for a few years, age 1-6. He also has motor dyspraxia so struggled a lot with physical skills. He put two words together for the first time at 2.5. He had little functional speech for a long time and we used a few Makaton signs, but he didn't really get the whole purpose. He did Kinder Gym for a year, age 4 (not that good, the teacher didn't realise he couldn't jump until term 4), and seemingly endless swimming lessons, age 3-12 (he still can't swim, but they were good for him, and he had a brilliant teacher).

Toilet training was a nightmare and he wasn't fully independent until 15. He doesn't really have friends although found a few people to hang with later in secondary school. But he never saw them out of school - the look on his face when I suggested this was priceless. I don't think it had occurred to him that they existed out of school.

DS did two years of daycare, then attended sessional kinder for three y.o. and four y.o. He never attended before or after school care as he wouldn't have coped with another, different group of kids in his day.

DS was funded through primary school. We used the money for aide time, speech therapy, OT and Physio (at different times). We didn't do any other therapies out of school, but did practice his skills. A couple of social skills groups, but they didn't really help as he didn't "get" being social. He generally paced at break times at school - it calmed him - and didn't need people to talk to.

No significant funding at secondary school, but he did get a little which was used on OT, and he had a lot of support from staff. We chose a school that was small 7-9, but bigger 10-12 and were very happy. Successfully completed VCE (with accommodations such as rest breaks and his own room for exams). Successfully completed Uni (similar accommodations). Now has an IT grad position job. It wasn't easy along the way but he has done tremendously well. His work knows his diagnosis and makes some accommodations, but mostly he does his job like everyone else.

He is our oldest. DD has autistic traits but not enough for a diagnosis (might be different now there is more awareness of ASD in girls and differing presentation, but she functions quite well and doesn't have any need for a diagnosis, she may choose to pursue this later). Other DS we are currently grappling with diagnosis. His psychologist says he meets the criteria but we are concerned as to whether it would make a positive difference for him. So, yes, we do kind of have more than one kid with issues, but we went ahead and had more, even knowing the first had problems.

Not sure that this answers any of your questions, but wanted to share our story and give you some hope. DS didn't have masses of therapy, whatever you can do helps. Most of my experience was with a different system, different funding and so not directly relevant for the specific questions.

This is amazing and gives me hope. Thank you so much. How long did it take your DS to get functional language? I feel like my DS has been stuck in the labeling stage for ages now. I will also look into swimming lessons as my DS does have motor delays

#20 Gumbette

Posted 11 June 2019 - 10:35 PM

 muminmelbourne, on 10 June 2019 - 11:57 PM, said:

- Is it really possible to learn play skills and social skills through therapy?

Absolutely.  DD had no interest in her peers. She would go to daycare and spend the day staring at the fence.  I would cry every time I dropped her off and picked her up.  It was gut wrenching to see her trapped in her own little world.  We did an ABA social skills group and followed it up with a shadow at daycare who followed her around prompting her to interact.  She now has a great group of friends, (had a best friend since kindy), and constantly nags me for play dates.  She actually went to 18 birthday parties in her FYOS.

- What is the optimal combination and hours of therapies/activities per week for an ASD child?

Depends on the child I would think.  15 - 40 is optimal.  DD did 5hrs / week  and finished her program in 9 months after catching up with her peers.  DS needs much more but it'is hard as he isn't as complaint.


- Are stories like Jack Exkorn ever possible?

Yes.  We were told approx 5% of children will lose their dx.  DD did this at 7.  But it's rare. She has a very high IQ which I think made a huge difference.  She went to ABA and would complete a whole program in an hour when it usually took most children weeks.  DS is more typical and although he has improved remarkably I doubt he will lose his dx.

DD was dx'd at 3.5 after seeing countless specialists - also level 2.  She had limited speech and we were told she would be high needs and have difficulty mainstreaming.

We did ABA for 9 months after which she had caught up with her peers. She started kindy at a private mainstream school with no in class support.  Her only therapy at this stage was ST for a lisp and OT for her dreadful handwriting.  She is now in Y5, has a best friend (in a group of 4), academically is top of her year, and is the most compliant amazing child you could ever hope to meet. We did enrol her in the secret agent social skills group to prepare her for upper primary / high school as friendships will become more complicated, but not really sure if she needed it TBH.

I cried every single day when DD was dx'd, to the point DH thought I would  harm the baby (I was 4 months pregnant with DS).

ETA If you are keen on ABA, you may wish to apply to self manage your NDIS plan.  This will give you the ability to chose how you use the funds.

Edited by Gumbette, 11 June 2019 - 10:44 PM.


#21 muminmelbourne

Posted 11 June 2019 - 10:40 PM

 Chaotic Pogo, on 11 June 2019 - 10:15 PM, said:

The fact that you are pushing to seek more information the very day of diagnosis shows what a great mum you are.

You are allowed to grieve. Not for the child you have, but for the future picture you had in the background of your mind about how life would turn out for everyone. It will be a different picture and a harder path both for you and for him. But he is still your same little boy.

The evidence based research  says 20 hours per week. 14/15 just doesn’t have the same impact, it’s like there is some kind of threshold you cross where it all gets more effective. IMHO you are better to do intense then have a break, that to spread out at a lower intensity of 10 to 15. That’s from both the research and from personal observation of my 2 kids that did ESDM. By break I do not mean complete cut, but a drop back to a couple of hours speech therapy and OT.

People, including NDIS planners, will tell you NDIS does not fund intensive intervention of 15 to 20h per week. They do. They just don’t want to. You have to be very determined, insistent and informed, with lots of paperwork and reports from your team of professionals to back you up.

I will always regret we missed that wonderful 2yo window for intensive for our eldest.

How are your kids doing now? Did you do ESDM in a group setting or individual one on one? How long did you do it for?

I will definitely increase the intervention hours

In regards to NDIS I thought we had quite a good package already however it is very interesting you say they do fund the intensive interventions. I will have to advocate much more stronger next year. We are currently paying a lot of it out of pocket  and it does stretch our finances however I feel very lucky to be in a position where we can afford this at all.

#22 muminmelbourne

Posted 11 June 2019 - 10:46 PM

 Gumbette, on 11 June 2019 - 10:35 PM, said:



DD was dx'd at 3.5 after seeing countless specialists - also level 2.  She had limited speech and we were told she would be high needs and have difficulty mainstreaming.

We did ABA for 9 months after which she had caught up with her peers. She started kindy at a private mainstream school with no in class support.  Her only therapy at this stage was ST for a lisp and OT for her dreadful handwriting.  She is now in Y5, has a best friend (in a group of 4), academically is top of her year, and is the most compliant amazing child you could ever hope to meet.    We did enrol her in the secret agent social skills group to prepare her for upper primary / high school as friendships will become more complicated, but not really sure if she needed it TBH.

ps I cried every single day when DD was dx'd, to the point DH thought I would  harm the baby (I was 4 months pregnant with DS).

If you are keen on ABA, you may wish to apply to self manage your NDIS plan.  This will give you the ability to chose how you use the funds.

Wow, sounds like ABA was a super good fit for your DD. Did you do home based or centre day care based? When you say she had limited speech what do you mean by that?

My DS has a whole lot of nouns but limited verbs and doesn’t answer questions very well. I hope one day to be able to have a conversation with him :(

When applying for schools, did you inform them of the diagnosis upfront?

#23 Gumbette

Posted 11 June 2019 - 10:47 PM

 muminmelbourne, on 11 June 2019 - 10:40 PM, said:

In regards to NDIS I thought we had quite a good package already however it is very interesting you say they do fund the intensive interventions. I will have to advocate much more stronger next year. We are currently paying a lot of it out of pocket  and it does stretch our finances however I feel very lucky to be in a position where we can afford this at all.

Can you change it to a self managed plan if it's not already?  We did that when we wanted to use to funds to provide a shadow for DS first 2 weeks of school.

#24 Gumbette

Posted 11 June 2019 - 10:54 PM

 muminmelbourne, on 11 June 2019 - 10:46 PM, said:

Wow, sounds like ABA was a super good fit for your DD. Did you do home based or centre day care based? When you say she had limited speech what do you mean by that?

My DS has a whole lot of nouns but limited verbs and doesn’t answer questions very well. I hope one day to be able to have a conversation with him Posted Image

That was DD.  She labelled everything.  Plethora of nouns, very few verbs.  Didn't answer questions, and as for asking - I still remember crying for joy when she started the whole "..but why..." phase that every other child had gone through a yr earlier.

When applying for schools, did you inform them of the diagnosis upfront?

Yes, as we wanted a school that would accept her for who she was.  The local public school said "..she would be a lot of work.." before even meeting her, so we walked away.  The private school said yes as long as she didn't have behavioural issues as they didn't have the staff to cope.  They went to observe her in her daycare before committing and ended up observing the wrong child!

Edited by Gumbette, 11 June 2019 - 11:21 PM.


#25 muminmelbourne

Posted 11 June 2019 - 11:06 PM

 Gumbette, on 11 June 2019 - 10:47 PM, said:



Can you change it to a self managed plan if it's not already?  We did that when we wanted to use to funds to provide a shadow for DS first 2 weeks of school.

We are already self funded as DS has been doing ABA for 4 months already :)

What age did your DD start asking questions? If my DS did that I would be so over the moon. Hoping and praying he gets there!!

Edited by muminmelbourne, 11 June 2019 - 11:08 PM.





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