To think my toddler isn't "showing signs of autism"? (Possible triggering)

[KleenexNeeded]

My DD is 2.8 and has a global developmental delay of 9-12 months, she's non verbal, has met all milestones including physical ones late. The paediatrician says she's showing signs of autism/ASD but I think he's wrong.

Sorry if this offends anyone. I'm just concerned I might have missed something.

These are the reasons why I believe the Paeds is wrong:

1. She goes to Nursery and although still in the toddler room and not the rising 3 room (2.5-3 room is Rising 3s) she is empathetic. If her friend falls over she'll go over, give him/her a cuddle and pat them on the back. Similarly MILs dog hurt her paw last week and DD sat in the dog bed with her stroking her face.

1. We have no issues with food. She eats everything, and doesn't actively dislike anything. She has the usual toddler fussiness of eating broccoli one week and hating it the next, but she goes back to liking it within a few days/weeks and she moves onto disliking something else. She eats a good amount, and is maintaining her weight.

1. Although non-verbal her understanding is fantastic. If you ask her to go and get a cup from the cupboard she will go and get her cup.

1. She sleeps at night. She wakes up 2-3 times a night but my understanding is this is normal for a toddler due to nightmares/being too hot or cold/needing a nappy changed etc She settles quickly when I go into her and has whole weeks where she doesn't wake me in the night at all.

1. She forms attachments with other people. She will smile if you ask her about her grandparents, friends at Nursery, keyworker etc. She will also give them hugs, or go to them for comfort if I'm not around and she hurts herself.

1. We have no behaviour issues. Nursery say she's well behaved and a pleasure to be around, they've used their behaviour policy on her once or twice a term since she started and they said that's not a huge worry as every child needs it using occasionally. At home she tantrums like a normal toddler but these last 2-3 minutes at most they may last 10 minutes which isn't excessive. Health Visitor has watched her tantrum she happened to be here when DD tantrummed over something once and says they're no extreme or anything to be worried about.

1. She has obsession but not to the point that she's not bothered by anything else. She's like any 2 year old, loves Peppa Pig, will happily watch it but if you give her a toy to play she's happy with that. She also has her favourite cuddly toy with her all the time but Nursery say that's normal and he (the toy is a boy, she gets upset if you say it or she when referring to it) sits next to her on a chair/against the wall while she colours/paints/does whatever and then she'll give him a quick cuddle as they move between rooms/activities, similarly at home she's happy for him to sit nearby while she plays/colours.

1. She is starting to develop an imagination. I know this will have been delayed due to the GDD, but she will put her dolls on the back of her unicorns and they'll go for a ride. She cooks us meals on the play kitchen, if you put a doll in the bath with her she'll give the doll a wash.

So MN am I way off the mark here and DD is actually autistic and I'm too blind to see it? Or is the Paeds wrong?

I accept that the paeds wants a cause for the GDD but in this case I'm not sure there is one, I think it's just one of those things.

None of those things rule out autism or just being a toddler...

The thing is, you've got two options and only one of them could potentially be harmful in the longterm to your DD.

If you get her assessed for autism and they rule it out, no harm done, if she ends up being diagnosed then support is available when she does need it.

If you don't get her assessed and she doesn't have autism, again no harm done... but if you don't get her assessed and she does have autism, that could end up denying her support until it's past when she would have actually needed it.

So surely, you'd be as well just having her assessed?

Me too FirstMrs, i think people are more taken aback by typically presenting autistic girls than they are boys. Probably because historically it's more acceptable for boys to be 'naughty' (I hate using that word but you know what I mean) and for some reason a girl stimming is less acceptable than a boy.

looking there are definitely issues around how ASD is seen in girls and boys but I agree they are societal rather than organic.
We do families no favours by perpetuating the myth that female autism is different from male autism.

Try telling my old families that when their non verbal, non sleeping, un toilet trained, stimming girl needs 24 hour care.

It's sad that lots of people perceive those with autism as not being empathic or able to form attachments.
If you've met one person with autism, then you've met one person with autism.
The spectrum is wide and varied and the stereotypes only lead to more barriers and stigmatisation for those with autism

Exactly FirstMrs, whereas my stimming DS is simply seen as 'boisterous' and 'energetic' by our (idiotic) relatives

I won't go on.
OP you have been given lots of advice and experience on this thread.
I know it can be scary but if your DD has autism you will cope.
I thought DS couldn't be autistic because he was (and still is) so sociable.
He ate everything we gave him and slept fine too.

You may be right. Your DD is still very young. Just don't discount it. Waiting another 6 months for assessment won't damage your girl and it may give you a clearer picture.

My DS does all those things and has both autism and ADHD. Only exception is that he has always hit his physical/academic/S&L milestones at the correct age or ahead.

I would listen to the paediatrician and see what follows. I don't see the harm in that really.

It could definitely be a possibility and some PP have given you some excellent material to look at.

I didn't have nearly the indicators that your DD has and so was missed throughout all of my growing up. I had a breakdown at 17 and again at 21 mostly down to an excessive empathy (tried to help everyone else because I felt their pain so keenly and burnt myself out) I was diagnosed with Aspergers at 25...

Personally I feel if I had had my diagnosis through school I would not have suffered in the ways I did.

FWIW my DD 4 presents very similarly to me, perhaps a bit less empathy, but otherwise hit all milestones no problem and is still suspected of ASD

I'm female. I have empathy, understanding, all things you lost as reasons not to be autistic yet I am autistic.

I wasn't diagnosed until I was 38 and it has damaged my mental health.

Very unlikely for a medical professional to misdiagnose. It's hard to get a diagnosis tbh.

The other thing I should have said is that no one would have considered DS to have ASD at 2.8, he started really presenting at about 6 or 7. He was at 2 what would have been considered fairly usual for a toddler ie not great with change, liked comfy clothes and took things a bit literally. Nothing massively alarming at that stage.

I don't know about diagnosing autism at this age, it seems young to me but then I'm not a professional. Re the wind thing my DD hated the wind as a little one, she would hold her breath if it was windy and you could see how terrified she was. She was also scared of the sound of a kettle boiling. She grew out of both.

If you feel the label isn't helpful, you don't need to use it. Everyone is on the spectrum somewhere, after all

This is the biggest load of rubbish and it's so tiresome to see it trotted out time and time again. It's as bad as Everyone is on the spectrum - no, only people who are medically diagnosed are on the spectrum, see below. And all the endless crap about making eye contact and empathy.

Many thanks to a PP who linked to the Rebecca Burgess cartoon.

A label is something you put on a suitcase, an autism diagnosis is carried out by medical professionals after the patient has been tested and demonstrated deficits in three areas of impairment.

Someone with a medically diagnosed condition can receive assistance and reasonable adjustments. Someone with a label stuck on their jumper or their suitcase won't. It's beyond me why people have an obsession with Autism being a label that can be attached or removed at will, unlike any other medical diagnosis.

And all the 'mild autism' hooey as well - see image.

This thread must score very highly for a Myths About Autism Bingo.
I think the only one missing is about how it affects so many more boys than girls.

Please OP, drop all your negative preconceptions and learn about autism, if your dd has it, she has it, someone upthread had a lovely phrase for it,
it will not alter whether you allow assessment or not. assessment does not give autism and not assessing doesn't take it away.

If she does, the SN boards here on MN are second to none for advice and loads of support.

My daughter is 5 and was diagnosed with ASD a year ago.

She is empathetic, although this may be a learnt behaviour through watching others

She had no delayed speech but her speech was unclear

She is the best sleeper I have ever come across, has slept through the night since she was 4 months old

She has no behavioural issues

She appears to play with imagination but I know now that this is learnt and lots of her play is repetitive

She has friends (is in fact quite popular now in Year 1!) especially boys, but she used to dislike other children when she was a toddler

She ate everything at 2, is quite picky now

Even if your daughter does eventually get a diagnosis of ASD, she will still be her. She will still be gorgeous and lovely, I spent a couple of years worrying about diagnosis and looking for signs, but honestly it changed nothing

I agree MrsD, dd has learning difficulties too and developmental delay, and is the only girl in her class of boys. She handflaps, meltdown publically, stimms, goes up to random strangers claiming she knows them and touching them. Not your typical 'masking', Asd girl.bso it is very obvious that she has SN.

I've not read the whole thread but I'd also be interested to know what actually makes them suspect autism.

My autistic DD has an excellent imagination, spoke really early, has a good friendship group, forms good relationships with adults and eats tonnes of fruit and veg and we'll generally. As she's got older she's been a bit more rigid about wanting the same thing every day or only eating cheese sandwiches or eating the same breakfast every day.

I'm sorry that you're going through this. If it IS autism, then take time out to grieve because you need to come to terms with it. It just means that the child you thought you had isn't quite what you thought the future would be like but your child is your child and you love them no matter what. Every child has their own special qualities.

If it IS autism, the earlier the interventions put in place, the better for your child. I wish I'd found out when my child was under 5.

DD has a few animal sounds and does say 2-3 words but not many.

She loves other children. The Nursery tell me she plays alongside but not with other children which I know again is normal.

I honestly still don't think she is autistic but am going to leave it 6 months then see how she is, she doesn't start school until September 2019 and doesn't legally need to be there until September 2020 so still plenty of time to get support in place if she is.

OP - it's hard (said as mum of non-verbal 4 yo)

I knew little beyond the stereotypes of autism when it was first raised with us 2 years ago. Its worth doing some reading around.

I don't know whether this will help, but my mind, autism is a label that doctors have chosen to assign to a certain group of behaviours/symptoms. These probably cover a variety of different causes (often relating to differences in the way the brain works) and it is slightly arbitrary how the condition is defined (as witnessed by changes in diagnostic criteria between different editions of the medical manuals).

Therefore if a child does receive that diagnosis, all that it is really saying is that s/he presents with enough of the relevant behaviours/symptoms to fit within the slightly arbitrary label. It is therefore identifying types of things s/he may need help with (which are the things she has to present with in order to receive the diagnosis). But it is not saying anything about his/her future - there is no one "autism" outcome because it is a label attached to symptoms rather than an actual well-understood syndrome. Hence the fact that individuals vary so widely. Once I realised the above, the whole process made more sense and I stopped fighting against whether the label fit my child.

As it turns out my DS didn't display enough of the symptoms of 'classic' autism to get an ASD diagnosis. He doesn't have any sensory or routine/rigidity issues. But instead he received a diagnosis of "social communication disorder" which is very similar to autism just without the sensory/rigidity issues. So he is a very well-behaved and affectionate child who loves going anywhere and doing everything with us, but he doesn't talk (despite having a good understanding) and only interacts with us on his terms - it can be hard to get his attention.

In looking at your DD you might want to focus on how much she socially engages with you. Does she share frequent glances with you, pick up on changes in your expression? Does she respond to being told no and is she motivated by praise?

Do listen to your instincts, after you have educated yourself about what people mean by the social communication issues that accompany autism. For what it was worth nursery workers also wanted to get my eldest evaluated for autism but in his case my instincts firmly said that was not the case because of the level of his engagement with us at home. It turned out he had hearing issues and all was resolved with grommets. Whereas with my youngest as soon as the paediatrician pointed out "he's not socially motivated" I knew they had a point.

She had genetic testing but it all came back fine

Do you mean she had a micro/CGH array done? Or has she had her entire genome mapped? Is she on DDD or 100,000 genomes? I ask because the micro array basically only tells you if you have all your chromosomes without any deletions or duplications. It's almost impossible to tell if every gene is working normally and without mutations without a full genome sequencing and even that doesn't necessarily tell you everything because everyone has some mutations and no-one yet knows what most of them mean.

Basically, what I'm saying is that there could very well be a genetic cause for your daughter's GDD which also could be linked to autism. FWIW, I had virtually none of the 'traditional' autism signs but am still in the process, as an adult, of being assessed for autism as my doctor believes I'm high functioning and masking. I also have a chromosome abnormality which may or may not be linked - it's never been seen before so no-one can say either way.

It may be that the paediatrician has noticed some behaviours in your DD that indicate ASD. Just get her tested the same way you would if the pead thought she may have a hearing problem or asthma or diabetes.

If the pead said he thought she may be struggling with her hearing in some way, would you get her tested? Or say YOU think her hearing is fine so you will wait 6 Months?

If she doesn’t have ASD, it is very unlikely she will receive a diagnosis. If she does have ASD, evidence shows that early diagnosis/intervention is beneficial.

She sounds very sweet btw and she will still be exactly the same lovely little girl whether or not she has ASD.

She microarray testing only, the paeds said he didn't believe it needed to go further than that, not sure how he can make a judgement really, he's met us for 15 minutes twice and for the first appointment which was 30 minutes long to take history etc but he only came for the first 15 minutes and a more junior doctor took the rest of the history/measurements of her.

My DD's little friend can do all those things and has been diagnosed as autistic since she was about 4. It's become more obvious as she's got older, it was easier to explain earlier as "being a bit behind verbally" and so on. I would assume the paediatrician has plenty of experience and a good idea of what they are talking about. Surely it is good that she is being supported and a "diagnosis" might open doors for more support?

OP, I think you should read up on ASD, as your OP is full of misconceptions.

GDD is code for "we don't really know what is causing the delay". A diagnosis of ASD comes with support and tools to help your DD. Early intervention is key. I've come across so many parents who blame themselves for "not starting intervention earlier" when their child finally gets a diagnosis at age 5. I don't want you to feel regretful in a couple of years thinking you "missed the boat" (this isn't true by the way, intervention IS still successful at any age, but early intervention is recommended due to plasticity in the brain). Does your DD babble? You want to be encouraging that as much as possible. Research shows that children who babble are more likely to talk versus those who are silent or make noise as opposed to speech sounds.

Some links for you:
accessba.com/2017/01/06/sparking-speech/
www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria
www.ambitiousaboutautism.org.uk/understanding-autism/about-autism/myths-about-autism
www.nectac.org/~pdfs/pubs/importanceofearlyintervention.pdf

You might not think she's autistic, OP, but you're not qualified to diagnose it.

She might be. She also might not. But if it's been recommended that she be assessed it would be remiss up deny yourselves the chance to fully understand what's going on with her.

Yes Huha, DS was diagnosed with GD prior to autism investigations.

Please find out how long the assessment process takes in your area, in some it's about 2 years.

Some schools are much better than others at putting interventions into place without a diagnosis, some insist on one before they'll do anything because of funding.