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Worried about my 19 month old

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#1 BluJay

Posted 10 June 2017 - 12:32 AM

He has no words. None.

He babbles and makes lots of sounds but no words.

He doesn't respond to his name.

He cannot follow a one step instruction.

He doesn't seem to understand much. Doesn't seem to understand simple things, like no, cup, ball or body parts etc.

He has never waved.

He doesn't point or otherwise gesture with any intent to communicate.

He makes eye contact but doesn't hold it. He will look at you briefly but then roll his eyes upward and look at the ceiling. He will also give you what we call  'side eye' instead of looking at you directly.

He doesn't engage in pretend play. Has been playing with cars (in the usual fashion) since very young.  Pretty much only plays with cars, brooms, brushes and remotes. But likes scribbling. Doesn't really play with other toys.

I told the nurse at his 18month check two weeks ago about the lack of communication and she did a questionnaire. She agreed that he is delayed in communication,  speach and language. However instead of referring us somewhere she said wait two months, just keep talking to him and check back in with her. But the appointment has turned out to be three months away and I just don't think that is good enough. I have made an appointment with my GP for Tuesday with the intention of asking for referrals to a developmental paediatrician,  speach pathologist and for a hearing test.

I would be interested in your thoughts about my concerns and my plans for seeing the GP on Tuesday.  Is it warranted and am I asking for referrals to the right people?

Thank you

#2 lazycritterisferal

Posted 10 June 2017 - 12:59 AM

Yes,  definitely get a referral to a developmental paed.   I'm sorry to say your description is waving red flags to me.

Early intervention is key.   I wish so much that I'd known more and had taken or eldest son.
In our case , I would mention a few things to the nurse.  Would wait and see.  DS would eventually meet the milestone and seem to grow out of the delay or nuance. I would then forget about it or push it to the back of my mind.

Thing is he didn't really even have (or we didn't really notice) the very noticeable eye movements/ you're describing.  As our DS has got older, his side eye direction and  lack of eye contact has become quite noticeable now.

You are doing the right thing.   It's going to be tough but the earlier it can be explored the better.

Is he lining his cars up? Is he walking well?  Does he walk on his tiptoes?  

Write a list of all the things that are worrying you to take to the gp and paed.  

Any odd meltdowns or such.

Hope this helps.

Edited for clarity

Edited by lazycritterisferal, 10 June 2017 - 01:03 AM.

#3 Mummy_Em

Posted 10 June 2017 - 01:06 AM

Yes, I would definitely get that checked. Ask for a referral for the Child Development Center, or whatever the public system is in your state, and also get a hearing test done if you haven't already. I think you will find that the wait list for public speech therapy will be many months long, you might want to find out about a private speech assessment in the interim, depending on your budget and how concerned you are at the moment. But stay on the public waitlist in the interim.

Edited to add. I definitely agree with pp that it is an excellent idea to write a list of all your concerns. It's easy to blank on the things that you wanted to raise once you are sitting in front of the professional.

Edited by Mummy_Em, 10 June 2017 - 01:08 AM.

#4 Steph116

Posted 10 June 2017 - 07:48 AM

I would deffinately get him checked, it may be nothing, but it's better to get it checked and know.

#5 Future-self

Posted 10 June 2017 - 07:49 AM

That is exactly the people you need to see. And yes, it is warranted just because there's some flags there.

You may need to wait for the Dev Paed - even privately it took us 4 months to get an appointment.

But in the meantime, the GP can refer you to a Pediatric Hearing test and you can see a Speech therapist with no referral. I asked for recommendations on these boards to get one that was a specialist in suspected ASD. That was based on my own instincts, and was fantastic as we started therapy with the speechie months before we actually could see the Dev Paed.

The list you have given here is the perfect jumping off point to talk to the GP and speechie about.

Some other things to possibly think about to talk about:
what upsets him? Any extreme emotional reactions? How does he react to adult strangers? What does he do when you go to a child rich environment like a park or a birthday party? What's his sleeping like? Does he eat a variety of food and textures?

As an aside, don't see that Nurse again. Her job was to refer you as soon as that questionnaire showed delays. Telling you to wait was not her call to make. Well done to you on following your own instincts.

Edited by Future-self, 10 June 2017 - 07:51 AM.

#6 SplashingRainbows

Posted 10 June 2017 - 08:05 AM

You're doing the right thing by pursuing the matter.

I hope your GP is more helpful (and I'm almost certain they will be).

#7 José

Posted 10 June 2017 - 08:09 AM

In my area no referral is required for a hearing test or speech pathologist

#8 Future-self

Posted 10 June 2017 - 08:13 AM

No, you technically don't need a referral for a hearing test but getting one from the GP meant that it was bulk billed our GP could send us to the one that specialised in under2s as not all places do small children apparently. So it saved me some phone calls!

#9 reesan

Posted 10 June 2017 - 11:36 AM

My twin girls presented similarly and were diagnosed ASD at 18 months. It really helped me to watch the Kennedy Krieger early signs of autism video to see the signs in this age group. There is a fabulous inexpensive book about how to start helping at home at this ago called an early start for your child with autism. It's about $20 and teaches parents to deliver the best evidence based practice for this age (early start Denver model). It can be hard to find a speechie and OT experienced with this age range so let us know where you are if you'd like recommendations.

#10 Anon100

Posted 10 June 2017 - 12:31 PM


I was looking for the same one reesan mentioned . I hope this is it.

Congratulations on being proactive and being there for your child.

#11 reesan

Posted 10 June 2017 - 12:43 PM

That's the one anon. :)

#12 *Melstar*

Posted 10 June 2017 - 01:52 PM

BluJay, you already have such a comprehensive list - well done to you for understanding how important these early milestones are.

I agree with all PPs. Do not wait. Trust your gut and seek a developmental paed appointment immediately. Whilst waiting for the appointment, a full audiology assessment is an ideal start. If you can afford a private paed, do it. The public wait is always more lengthy.

There's a great resource from Hanen called, It Takes Two to Talk or something like that. It's an easy to read book about early communication strategies. Early communication intervention relies heavily on parent involvement because it needs to be an all day kind of thing rather than a once a week visit to a speechie.

Good luck with making all the appointments. Check back in and let us know how you go.

Edited by *Melstar*, 10 June 2017 - 01:53 PM.

#13 Jbeep

Posted 10 June 2017 - 03:04 PM

Like others have said, you are doing the right thing not waiting.

I would get those referrals for a private developmental paed ASAP. And be firm. I asked my GP and had a bad experience. I was told my son could say more than four words and knew what his name was at 4 years old, so don't worry. Some GP's have no clue about ASD.

I also spoke to the same GP about my daughter, who had speech regression from 18-24 months, and was told to wait and see, and that she wouldn't go backwards.
Lucky I didn't follow his advice.

You sound like you know your child really well, and have the right to be concerned. I really wish people wouldn't tell others to wait and see. It's the worst thing you can do. Start some private speech therapy now if you can afford it, you don't need a diagnosis or a referral for that.

Your son is lucky to have such a proactive mother.

I wish you all the best.
Please let us know how you go, and feel free to ask for anything else you need help with xo

#14 reesan

Posted 10 June 2017 - 03:34 PM

The Hanen book recc is really good, it is very exxy though (about $150). I'd be looking at the ASD specific version (called more than words) over it takes two to talk. Lots of good ideas on hanen's website too.

#15 sarahec

Posted 11 June 2017 - 12:43 PM

I would do all those things you are doing. It can take many months (6 months) to get a paed appointment so best to make one now. In the mean time get a hearing test done and start speech therapy.

Good luck!

#16 Lokum

Posted 12 June 2017 - 11:30 PM

 Future-self, on 10 June 2017 - 07:49 AM, said:

But in the meantime, the GP can refer you to a Pediatric Hearing test and you can see a Speech therapist with no referral. I asked for recommendations on these boards to get one that was a specialist in suspected ASD. That was based on my own instincts, and was fantastic as we started therapy with the speechie months before we actually could see the Dev Paed.

As an aside, don't see that Nurse again. Her job was to refer you as soon as that questionnaire showed delays. Telling you to wait was not her call to make. Well done to you on following your own instincts.

Yep, we were 2 months into OT session before getting into the dev paeds, and I agree about that nurse dropping the ball.

The flags are definitely there. My little ASD boy had a passion for brooms as a toddler.

However, if that's how it ends up for you, that will be OK.

You're on to it early, and the interventions make such a big difference. You being on to it early will mean you come to understand him very well (whether it's ASD or nothing or something else), and that will help him enormously.

#17 BluJay

Posted 12 June 2017 - 11:31 PM

Thanks for the feedback everyone.

I feel like I have failed him. I have been through an extra stressful situation and had my own health issues the last few months that I just didn't pay these delays and behaviours enough attention. I should have got help for him months ago :(

Thanks for the book recommendations. I reserved the Early Start book at the library and will pick it up tomorrow. They don't have any of the Hanen resources unfortunately.

Reesan and Anon - I actually watched that very video the night I first posted. All I could think was that my child was like the second child in every scenario.

I will try to get him to a private speech therapist. I doubt I will be able to afford a private Developmental Pediatrician though. I am a single mother of two and am on DSP myself so the budget only stretches so far. All I can think about now (other than the actual problems and the eventual diagnosis that I think is inevitable) is that he will suffer more than he has to, and have worse outcomes, for the rest of his life, because his mother isn't well off :'(

I am in Perth so if anyone has any recomendations of professionals or places I can go to for help or get reffered to I would appreciate it.

I have made my list for tomorrow. It includes everything in my OP plus some other observations:
  • Doesn't enage injoint attention - he doesn't share interesting or enjoyable things, doesn't follow in the direction I'm pointing to etc
  • Has no interest in other kids. Will protest and actively move away from them if any child/children try to interact with him.
  • Has no interestin adult strangers. ill just ignore them and carry on or hide his head in my shoulder.
  • Paces back and forth in a straight line several times a day.
  • If he doesn't want to be held he will go rigid and struggle to he gets away. If he doesn't want to be picked up he will go floppy and slide through your hands to the ground.
  • Food issues. He seems to only eat foods that are in a colour continuum of white to brown. So he will eat mashed potato, chicken, white fish, rice, vanilla yoghurt, some cheese, porridge, wheat bix etc, but refuses anything orange, red or green.
  • Doesn't mimic others.
  • Disordered sleep

It's not good is it....

#18 mayahlb

Posted 12 June 2017 - 11:52 PM

As you are in WA if you are seeking an autism assessment it will require a panel assessment of 3 specialists (dev Pead, speechie and clinical psych). It can be quiet a long process in WA. I would recommend seeing your GP asap and getting the ball rolling. Don't take no for an answer and push hard if necessary. Wait lists can be long for the public service but get engaged with them now. WA is notorious for being hard to get a diagnosis for younger children publically. I know I had to ask and ask and ask and ask before finally asking all 5 therapists we were currently seeing to corner the Pead and tell her to refer us for the damned assessment (which was done 6 months later when he was then 5.5.)

NDIS is currently rolling out in WA and under early intervention you should be able to access funding. However it will require assessments. Maybe check with your local disability services commission office as they are responsible for the roll out. The LACs can hold a wealth of information even for those who do not have a diagnosis.

I want to say straight up you have not failed him. At all. In no way. It's something that's very easy to feel but you really haven't. You have picked up the signs early. You are looking into it. He's still your gorgeous boy. He's just different. The days may be hard, you might have days where you despair but I will say there will be days where you look at your child and love him whatever else is going on. You learn to celebrate different things. You will take notice of all the things little and big. You might decide to dance up and down the driveway or want to throw a party the first time he says a 4 word sentence or actually makes a friend. He will show you a new way of looking at the world and make you question things you took for granted... my child embraces being autistic. Yeah things are bloody hard at times (don't even ask me about the food issues at the moment) but we wouldn't change it for the world.

Sorry I went a bit off tangent I just wanted to show you a glimpse of what our little family has been through.

Edited by mayahlb, 12 June 2017 - 11:53 PM.

#19 lazycritterisferal

Posted 13 June 2017 - 12:05 AM

You have not failed him!  You're amazing!  You've picked up all these issues early which is brilliant. 18months is early. Definitely compared to both my sons.

Your son should have the advantage of early intervention which is priceless.  

Speechie and OTs are priceless.  You should have access to government assistance either through ndis or ecis of something. My then 3.5 year old was put straight on the list without a dx.

You are  your son's champion and you are an amazing one at that.

I wish I'd known more and realised when our sons were a similar age.

#20 mumofsky

Posted 13 June 2017 - 06:34 AM

It can make so much difference seeing a good paediatrician, or at least it did for us. We had been told by a child psychologist for weeks and weeks that (then 18 mth) foster DD was completely normal and just had a bit of a temper. I started to question my parenting. Paediatrician watched her for 5 minutes and bluntly said "there's something wrong, and it's biological not parenting related if you've been wondering". She sent us for a micro array and her 22q11 chromosome disorder was diagnosed. If I had accepted what the psychologist said we would be a lot further behind than we are.

Sometimes parental instinct is more accurate than anything else, and you seem to have a strong clear instinct about your little one. I think you're right to be checking out the red flags you note.

#21 Displayanome

Posted 13 June 2017 - 07:00 AM

OP, 19 months is an early pick up. You have done well. My DS has severe autism and the niggly thoughts only started at around 12 months. By 18 months they were yelling at me. I think subconsciously you push them aside and then just one day it comes through loud and clear.

I found it took significantly longer for DH and GPs to get to that point.

#22 crazy87

Posted 13 June 2017 - 08:24 AM

You are definitely on the ball because 18mths is early to be getting intervention :) so he will profit from that!

Once you get into a speech therapist(go private if you can it will be quicker), ask them to fill in the forms for Centrelink Carers Payments for you. That will help with the fees!
And ask the GP if there are cheaper privates peads they can refer you to. You get a % back from Medicare.

#23 reesan

Posted 13 June 2017 - 08:31 AM

You don't need to feel guilty, others have explained that well. However I also avoid guilt for pragmatic reasons, there is too much to be getting on with. If finances are strained, there's even more to be getting on with as you'll need to do more intervention yourself and marshall the resources around you. That's why I emphasised TWINS diagnosed so early (ie loads of kids with loads of issues). 3 years in it's a blessing that there's been so much to do as I'm an early intervention super mum now and we've all benefitted.

Great job re early start for your child with autism. You only need to worry about chapters 4 and 5 right now. Better to read them ten times and apply, apply, apply than read broadly at this stage (better by a magnitude of a thousand). Even after three years of intensive therapies and coaching those two chapters are my daily bread and butter.

#24 Elizabethandfriend

Posted 13 June 2017 - 12:57 PM

Op, hopefully people in WA can guide you towards the best public pathway over there.  Don't worry too much about money.  Most people access $12,000 in autism funding, get the carers allowance which is worth about 5k a year and have access to free or very low cost state based early intervention programs.  The ndis should in theory make this even better.  Diagnosis can occur through public programs.  You need a knowledgable GP to ensure you access the right programs and get on the right lists.  There is also a care plan through Medicare that can subsidise the cost of 5 speech sessions each year.  
I know many people who support their children brilliantly using only the above programs with no private funds.

#25 BluJay

Posted 13 June 2017 - 01:49 PM

Thanks for the further comments.

I picked up the book this morning and will read Chapters 4 and 5 ASAP.

Elizabethandfriend - I have been doing what reading I can about funding and those things have come up but I don't totally understand what I should be asking for.

Should I ask for the Better Start thing to get subsidised sessions or is it the Chronic Disease Management plan thing to get 5 sessions?

What is the Helping Children with Autism package and how do I get it? Can you only get it AFTER you have an official diagnosis or can you get it to try to get the diagnosis?

I tried to lodge my intent to claim Carers Allowance through My Gov this morning but something is going on with the site again so will try again later. Who needs to fill in those forms? Can my GP do it or will I need to get a Speech Therapist to do it, or some other professional?

Thanks for any info. My GP appointment is in a couple of hours and am feeling a bit nervous. I just want to make sure I ask him for the right things

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