how did your child's autism first come to be noticed?

[helpamamaout]

Sorry for the poor choice of wording in the title. I suppose I am trying to ask, if your child is now diagnosed with autism-:

1. what was the first thing/phenomenon that you noticed and spoke to someone about?

1. now in hindsight, what was actually the first thing that occurred? (ie was it the first thing you spoke to someone about or in hindsight were there other things happening before this?)

Again, apologies for my poorly worded question. I do not wish to cause offence.

As you can no doubt guess, this question is coming from someone who is going through the process of querying if their child will be diagnosed with autism. Dc has begun to lose some communication skills. Have been watching and waiting for a while, but no progress (lost skills not returned or improved). Have spoken to friends and then health visitor. Health visitor also had concern re: this loss of skill (moreso than if the skills hadn't been developed in the first place) and though it merited assessment. HV referred to speech and language. Have received a triage phonecall from SLT who have accepted the referral and are going to get in contact with an appointment.

I suppose I'm hoping to hear from someone who has been through the assessment process, and as a result their child has been diagnosed with autism.

Hope that's ok.

Did not speak (not even mum or dad) by 18 months, no words until age 3, no babbling as a baby. I have two older children to compare to, it was obvious there was something different.

Screamed, cried and covered ears if people sang nursery rhymes or clapped.

Did not engage with people's facial expressions in the way the older two did as a baby.

Finally diagnosed age 4, we had been asking for speech and language support/assessment since he was 1 and a half, had local support from 2.5 years for speech via children's centre after pushing and pushing, only got SALT support age 3 once he started nursery, which is when he was finally referred for ASD assessment by the SALT.

thank you so much for your reply choconuttolata like you, we have two older children and notice something different with dc #3's communication development (also some other stuff which at the moment we are continue to observe not knowing if they will become increasingly part of our son's life or not e.g "flapping"(wings) gesture when upset

I think that there are so many ways different dc present.

Do you want to tell us about your dc? dgc? dn? and people can perhaps say if that is something that rings bells ?

Speech delay (didn't speak till 3)
He was my first but in hindsight no babbling didn't play and fascinated with random objects eg fire glass alarm door handle .

I always recommend this book, it's very down to earth and well-written. It covers first signs, assessments, how it feels as a parent etc. so might be useful for you.
www.amazon.co.uk/Autism-raise-happy-autistic-child/dp/1409176282?tag=mumsnetforu03-21

ok, good idea

dc has just turned 18 months.

Don't know if the first bits are relevant:
He has a closed dimple at the base of his spine.
He has a hair follicle (with hair growing out of it) on his nose.

Very "active" growing up. eg. sat unsupported two days before he was 5 months old (whereas two older siblings were always "behind" with gross motor skills, but "ahead" with social stuff).

Crawled approx 9-10 months.
Walked 13-14 months

Started to babble/first sounds/first "words"/point all "normally".

Then at 15 and a half months all his VOCABULARY DISAPPEARED. Lots of two-syllible words all gone. eg. sibling names, pet names all just gone. I used to be ma-ma. Now it's just a 'm' sound. DH used to be dada, now just occasionally da (single syllible, da-da as a word has completely disappeared). NO NEW WORDS since fist week of June (two and a half months ago). Dc just "grunts" or shouts. Can point to what he wants. Remains interested in what is going on around him (what others are doing). Does some imaginative play e.g make a cup of tea at toy kitchen. Doesn't wave as much as he used to.

Is there anything else I should comment on?

Our primary concern is his disappearance of vocabulary

(as opposed to it never starting in the first place and being "just" a "late talker". Does that make sense?)

I would say he started (and forgive my use of language, I'm not sure of the right words to say and don't want to cause offence)

dc also pinches/nips a lot (had never thought anything of it, other than it wasn't to be encouraged) but have read online it could be a feature of an autism/asd picture?

thank you for your feedback tacobell and book recommendation smallinthesmoke

Has his hearing been checked?

friends, family, health visitor and slt have all asked about his hearing!

Maybe we're missing something ( I'm a bit of an anxious mum so would have had him checked before now if we thought he wasn't hearing round him) but we genuinely don't think he has any issues hearing. But maybe there is a small hearing issue that we're not being sensitive too?

Yes, the loss of language is something that would raise concerns with me.
Does he pinch himself ? or Others ?

What is his eating like ?
Is he sensitive to any senses - not liking loud noises or bright light or certain textures (be that in food or in types of clothes or not like wearing clothes)
Does he play in any way that you would think was different from his siblings at that age ?
Does he walk the same as his siblings or is there anything different about that?
Does he have a real interest in anything (eg always closing the door, or switching the light switch on or off)?

Pls ask for him to be referred for a hearing test. My friends DS lost all his words at 2.5 and basically just said bub bub all the time. Turned out he needed grommets and that sorted everything out completely. But they were convinced he was autistic.

Pinches other people (also bites but up until now thought it was he was maybe sore with or something. Whilst we're now possibly overanalysing "normal" things we're open to the possibility it could mean more).

Goes through phases of eating a lot of one thing then moving on to something else.

Doesn't like sound of hoover.

Interested in things that move in circular motion if you know what I mean eg moving a car with wheels along the floor (but wouldn't say it's an obsession that excludes use of other toys)

Switching lights on and off, yes!!!! (Ordinary on/off and dimmer switches, our living room can be lihe a disco!!

Nipping and pinching CA be frustration at not being able to communicate. I would definitely get hearing checked, I had glue ear and hearing problems as a young child and it impacted my social skills and confidence massively.

Also another thing to watch is older siblings dominating verbal exchanges in the household and speaking for him. This is something that both my eldest two do and it has in some ways hindered my youngest, we have to ask them to give him space to speak now as he needs more processing time and it comes so naturally to them that it is hard for them to stop talking long enough to allow him gaps to join in.

One to one play between ds and an adult was one way that worked really well in building ds's language skills (adult talks about what they are doing and adds in descriptors to build language, e.g red car instead of just car).

It is difficult as ASD can present so many ways - my son scores quite highly on the spectrum but wasn’t actually diagnosed until age 12. Looking back & piecing certain things together the signs were there however as he is high functioning, went to a small school, very structured home life as I was a childminder etc. he was able to cope but really struggled as soon as he went to high school.
I know in some areas they will not test (even when they suspect) until children are at least 4.
Cousins in Australia have both recently been diagnosed (ages 8 girl & 11 boy) the system is very different there & again they both present very differently

Son was diagnosed age 7. Started seeking diagnosis after school became an issue and behaviour escalated to violence.
In hindsight he was always a child of routine and tantrums, Had speech delay and didn't play properly.

Daughter not diagnosed till 13 when she started having panic attacks and after lots of tests in hospital they concluded she had autism and adhd and was in overload causing serious physical symptoms including loss of vision.
In hindsight she walked on tip toe, had immature speech, loner, perfectionist.

The thing with early signs of autism is that so many of the things, individually, are very normal phases that a lot of dc go through. Very often it is the combination, or sum of different concerns - that on their own aren't a concern - that would suggest it is a good idea to ask for an assessment.

I would ALWAYS recommend asking for a hearing test as well - not hearing (and that can be a temporary thing, not always permanent) can have lots of knock on effects on the way a child presents, however, if presented with all the things you've said, I would also be asking for a referral for an assessment for autism too.
In most areas, it is a long process. He won't get a diagnosis if he doesn't have it, but if he does, it is better to know sooner rather than leave it.
Obviously none of us can know - we've not seen your dc or spent any time with him, all we can go on is what you are telling us.

First referred age 3 by nursery because he didn't really interact with peers, lacked focus/concentration, had poor fine motor skills and was only really is interested in activities that involved wheels/transport.

He had 4 further referral assessments - all inconclusive with points of concern but no definitive answer until age 11 when he was finally diagnosed.

Now 14 and still pretty much displays the same behaviours that raised the question in the first place.

Thanks
Think I'm going to ask hv today to refer ds for hearing test.
Imagine waiting lists will be long owing to covid shut down
Does anyone know if anyone on high st tests children? I'll have a Google

At 2 all speech stopped, eye contact became less. Was always a v v happy child and no trouble the gesturing started about 4 but he was diagnosed at 2 1/2

He communicated around 9 months by clicking his tongue - I would click back,
He’s click back and we’d both giggle. In hindsight, that was the first sign.

I don’t have a child on the spectrum, but I do have one that has a SAL delay and disorder. That presented itself as very slow language development- very little speech at 3 years old. He didn’t develop speech then suddenly lose it. I don’t know if that is typical of a child on the spectrum? He did bite and do dangerous things - all as a form of communication as he was so frustrated. Getting your DC’s hearing checked should definitely be a top priority. You can go privately to an ENT consultant to ask for a referral to an audiologist (We did this). I wish you and your DC the very best for the future. You’ve picked this up early and you are fighting for them. You are doing everything right. Good luck.

Our DS met his normal milestones then when he was around 18 months old stopped communicating verbally. He then started again when he was about 2, it sounds silly now but we didn't think much of it.
He had some strange quirks, liked flicking light switches and opening and closing kitchen cupboards, again we didn't think it was anything to be concerned about. His sleep was awful too, if he slept for 3 or 4 hours it was a good night. When he started reception at 3 the teacher was immediately concerned that he wouldn't mix with the other children and he would crawl into a small cupboard space and stay there. She said about getting him checked for autism and it was only when we started to read up on it that we realised how many autistic traits DS had.
It took about 12 months to get a diagnosis, he had to have speech and occupational therapy once diagnosed. He's 12 now and has also been diagnosed with ADHD. He's incredibly bright but focuses on a very narrow range of interests (aviation and Russia) to the detriment of his school work.

Good luck op!

Thank you

Spoke to hv and gp today. Referral (urgent) made to ent at local hospital for hearing test. Will give it a few days to see how long waiting list is and take that side of things from there