Possible ASD in 19 month old - need advice

[rachndan]

Hi

For a long time (approx 8 months) we have suspected our 19 month old daughter has autism.

When she was 11/12 months she wouldnt respond to her name, she didnt point, wave or babble/talk. She was a very fussy eater and some other things too.

However it was then determined that she had glue ear, so this could have been the cause behind the above issues.

The NHS couldnt do her grommets until about November so we paid to have them fitted privately about a month ago. Her hearing has definitely improved and she responds more now to her name and the command "no".

But thats about it.

Still no talking (makes lots of noise but nothing that sounds like a word), doesnt point or wave, couldnt/doesnt follow any instructions other than "no", extremely fussy eater, eye contact is sketchy.

We have done an online M-CAT-R test and being generous with the answers she still scored an 11 which says is high risk.

She goes to nursery once a week and gets on well with the staff and other children, she doesnt get phased by new environments or going to new places, she doesnt mind interacting with other children but does like her "me time" and/or her own space at times.

The HV has monitored her over the last few months and now we have ruled out the hearing she is referring to us to the community paed. What happens now?

We already have a 6yo daughter so we know what NT development should look like and whilst our 19mo is a very very happy girl she is not on track for where she "should" be.

It could be possible that she is say 6+ months behind due to the effect of the glue ear but I am not so sure.

Any help or advice about what happens next and how best to handle it would be much appreciated.

I also want to make sure we dont get fobbed off due to her age. Surely the earlier the help the better long term.

Would also be interested to hear from parents of young girls with ASD as most I have read up on is about boys.

Any advice on how to improve her fussy eating would be welcomed too.

Thanks

No direct experience of ASD but glue ear had a big impact on our daughter. She didn't talk until very late, wouldn't take part on group activities at playgroups etc. Seemed happiest playing alone (e.g. Nose in her dolls house, babbling made up language to herself). Was very difficult to look after in busy, crowded places as she wouldn't stay near me, would just go off on her own.

A couple of years down the line, glue ear resolved and some speech therapy to help her make herself better understood and she is a wonderful, happy, sociable schoolgirl.

Apologies, the last line of my post not well worded. Not suggesting that children with ASD aren't wonderful, happy or sociable just that the concerns we had seem to be resolved

At this stage I think you need to keep in regular contact with your health visitor and see how she develops over the next 6 months or so. Also keep talking to nursery about how she is there. She is still very young.
Ofcourse procedure varies from area to area but in my area community paediatricians are so in demand that they would want to give the grommets more time before doing further assessments. Having said that, definitely talk through your concerns with your health visitor because they will know the services in your area.
Good luck

Early diagnosis is only beneficial because it can help to access the correct therapy and stratigies. There is nothing to say you can't take a 'watch and wait' approach to a diagnosis while still implementing autism specific stratigies and getting Therapy for your DD. If your prepared to pay privately I would recommend you get a Speech therapist with autisum and hearing impaired experience and an occupational therapist who has sensory intergration training.

Two diagnosed with asd and ADHD girls here. One diagnosed at 6 (in the system from 2) the other diagnosed at 3.

My older one was very classically autistic. Wouldn't respond to name, not sociable, food and sensory issues, would jump constantly and climb all the time. Lack of eye contact, late talking, lack of social skills. Couldn't follow instructions, hated busy places, didn't point (that said neither did my other NT child). Didn't wave. Screamed a lot. Hated walking. Hated noise. Couldn't sit still for love nor money. Always on the go. Sharing and turn taking a huge issue.

My youngest I wouldn't have said she seemed autistic until about 18 months. No speech, no waving, no pointing, not at all sociable, can't wait, time taking an issue, lining up an issue, sharing an issue. Climbs, jumps and runs a lot. Very sensory around clothes. Lines things up. Hates busy places. Doesn't share interests.

My older one is seven now and has changed a lot. The toddler years with her were very hard. My youngest is very tricky. Glue ear I've heard can mimic autistic traits. I would say go to the gp and get referred. The lists are long for a formal assessment. I'd also get some good speech therapy. The services here for kids with autism don't really exist. Speech is about it. And we barely get any. Our kids are unique. I've read a lot and to be honest we just apply what works for them. Autism or not. Give the grommets time to work and monitor 🙂

WildCherryBlossom - thank you for that, it could be that she is just delayed because of the glue ear and things may resolve themselves with time. Fingers crossed its a similar situation to yours! What happens in the speech therapy and what age did she go?

Msqueen33 - thanks for your post. Our daughter is similar to what you described but has no sensory issues with clothes (other than hats), she hasnt taken to lining things up and isnt fussed about busy places.

All - thanks for your posts. Im not sure how speech therapy will go as she is only 19 months old and doesnt hold much eye contact nor will sit still so not sure how much joy a therapist will have at the moment? What happens in this therapy sessions?

Thanks

A speech therapist may not do direct therapy at the moment it would likely be more about strategies and techniques for you to implement. For a child who is recovering from glue ear they may do some 'learning to listen' stuff that can just be about encouraging her to attended to sound through play. There is a lot a speech theorist could do but I doubt the NHS would pay for it.

Our speech therapy is play based. I'm saying your dd does or doesn't have asd but all asd kids are different. My eldest never lined things up and doesn't have issues so much with busy places. Paediatricians tend to want to tick specific boxes but not all kids with asd fall into those boxes. Some kids with asd have limited sensory issues. Some have loads. I've found with my kids their issues tend to change over time. My dd had an obsession with a coat but we've managed to get her into hoody tops now.

Thanks we will see what comes of the HV's referral and see what happes with her development in that time.

Msqueen33 - how old are your girls and what is the average day like for them? Do they go to school?

As Thatswotshesaid said a lot of it is teaching you strategies. My daughter started at 3 and I was so impressed at how they found ways to work with her. I hadn't imagined her to be able to take part productively in group activities. We did NHS speech therapy from age 3 to 5 and a few months of private when she started school (she was self conscious of her inability to say her own name coherently and we wanted to boost her along a bit). We have voluntarily stopped it all for now.

Any tips you can remember from the early days of it? Although your daughter at 3 at the time was a lot older than ours is now. Was there a reason it didnt start til 3 years?

Ask for speech therapy.

I had glue ear as a child and that was treated the same way as your daughter's was. I had speech therapy and it helped enormously with communication

My eldest is 7. She's in school but with a full time 1:1. She did have speech when younger but her speech is now on par with her peers. She has regular sensory breaks at school so will go for a run round, do a job such as take a note to another teacher or do some colouring.

My youngest is 4 and was at nursery from 9-12 and will go to school next month with a 1:1. She will have regular sensory breaks and a visual timetable. We've also decided to pay for speech privately. We do have a play therapist who comes once a week who does turn taking games, matching games and other activities she finds hard like having a book read to her. She has it all on a visual timetable. Then towards the end she'll have activities that motivate her like bubbles. We try getting her to go along to do as many things as your average four year old would do that she might enjoy. To be honest I've found the younger years more trying. And felt that my eldest accepted therapy better when she was older as her reasoning was a lot better.

Thank you so much. Our worry is her not leading a "normal" life if there is such a thing but you know the things I mean, school, friends, partner, job, house, kids. Is any of that a possibility with an ASD child?

I am still hoping it may just be a delay from the glue ear as was with WildCherryBlossoms daughter.

If you dont mind telling me, how much is the private speech therapy? I have no clue.

Thanks

All asd kids are different. I'm on a Facebook group and a few kids have offers from oxford. There's a guy with autism who made a lot of money from his business and retired early and has a wife and two kids. It's just a slightly different path. We're in the SE and private speech is around £70ph.

Thanks for that. How often were/are you doing the sessions?

My youngest is being assessed for autism. She was referred to CDC at a similar age to your daughter at my own request. She was seen just before her 2nd birthday. The initial assessment agreed with my concerns but due to another on going health issue (dd6 also has suspected leukodystrophy) we arranged a home assessment as well by the SN HV. Which happened in may. And came to the same conclusion. She is now on the diagnosis pathway which is around 18monthe to 2 years in this area.

I do have a teenager with autism as well. She is very intelligent, an amazing artist, has a small select group of friends and is a lovely lovely girl to be around. She loves live music and sees a lot of bands at gigs in London, usually myself or dh will go with her as her friends don't like the same music. Dd1 also goes with her if she isn't working.

Thanks for that post. It is very encouraging to hear about your older daughter and the enjoyable and independant life she is leading. Its what we all essentially want, that and good health.

We are only 6 weeks on from my last post. She is now babbling more, nothing really cohearant but is back to saying mumma. She is now 21 months old but I was kind of hoping for more.

Still no pointing or waving yet.

Not sure if she is just still behind/delayed due to the hearing issues that she had or whether there is something else going on.

She goes to nursery for 2 full days a week and enjoys it. Started interacting more with others and eating a very small amount of food.

I have an autistic daughter and she leads a normal life. Cause she does, plenty of autistic adults do

My daughter didnt really wave or babble. She didnt wave until at least 3 I would say. Now she is 9 she goes down the park and walks to town and goes shopping on her own.

Its communication-wise. We just dont get much back or much interaction from her in a verbal way.

It always seems to be career men that do this and not career women. I wouldn't do this to my husband, even if in court or removing children.

Sorry wrong thread