If you have a child with autism

[ChillysWaterBottle]

Hi,

If you have a child with autism, what were they like at 18/19 months and what are they like now? What was your journey like? When did you suspect/know? What behaviours did you notice? How did they develop?

As much detail as you are happy sharing. I will read everything anyone writes. Thanks so much x

Hi can I ask are you concerned your child is on the spectrum or do you have a diagnoses?

There are lots of these threads, I suggest having a search through the archives first.

I’m happy to answer any questions just wanted to be sure what your situation was xx

I am happy to answer questions. But would not mind also knowing if you are concerned about your child.

Also.... every child is different- even children with autism so it is not one size fits all though.

Our major indicator was absolutely no speech, but there were other signs too from very young looking back. She's fully verbal and currently at university now. Diagnosed at 2.5

Autism and adhd. He was very hyperactive and into everything. Mainly sensory. He once got into the duct in the toilet, he nearly had the bleach at my mums(she said he woke up early and snoke into the bathroom), he was a child that needed constant attending to and my mum finally understood why I was so on edge about checking her house after having him for the night. She no longer has him but he’s pre teen. He climbed on everything and would only play with trains, cars and a tool bench. He had not much interest in books although I would read to him all of the time and even now doesn’t like to read. He would dart on to the road if we were out and run off, it would be so stressful so I had to keep him in a pushchair until he was 4 (had some comments about that but it was for his own safety). Nursery found him full on too and wanted extra help with him due to him always being on the go. Now he is still on the go, talks a lot, skips everywhere and is sensory seeking all of the time. Also doesn’t sleep well

We're waiting for assessment on NHS. Considering going private on the advice of a paediatrition friend but its so expensive. I'm feeling a bit lost. I can't tell what behaviours are typical and what are concerning since I have very little experience with toddlers/children x

At 18/19 months he couldn’t:

• show interest in other kids
• Point
• Shake/nod head
• respond to name
• respond to basic instructions
• engage in imaginative play
• engage in group play
• copy others
• understand danger or risk
• regulate his own food/drink intake

He did:

• play unusually with toys - like turning them upside down or spinning wheels for ages
• want to do sensory stuff all the time
• put EVERYTHING in his mouth!!!!
• Stim- mostly jumping up and down on the spot which started around 2/2.5
• crave repetition
• self soothe/settle - we thought he was just a really good baby!

He also started talking around 14/15 months and then at around 15-20 words totally stopped altogether.

To be honest he’s 3 now and not a huge amount has changed, he’s still non verbal but making occasional attempts. He plays more with toys and shows interest in other kids…but hasn’t a clue what to actually do with them.
He has just started to copy on occasion. He’s a bit more risk aware but not much and he does respond to his name sometimes but it’s hit and miss. The biggest issue for us is his PICA (eats everything) and his inconsistency. One day he’ll listen if we shout ‘NO’ the next day he’ll completely blank it like we aren’t even there. He also has REALLY BIG FEELINGS which he has no control over and the meltdowns are really bad. Worse than the regular terrible 2’s/3’s.

I can think of signs going back to when she was a baby. I’m the reverse to some of the other posters, as her speech was exceptional from an incredibly young age. The signs for us were social and emotional reactions as well hyper-fixating and stimming. She was diagnosed at 5.

Can I ask, was your child following instructions as a non-verbal small child? Your post was incredibly encouraging. Thanks.

OP, I’m not very far in my journey. I suspected something was amiss at 12 months when my DD wasn’t responding to her name or pointing. Things didn’t improve, so I saw a private paediatrician when she was 18
months, hoping to be told I was being over anxious. Unfortunately the doctor agreed with me and indicated that it could be Autism. My DD was diagnosed not long before her third birthday. As my DD is still very young and I don’t have the ‘ending’ to the story, I’ll stop there.

Did not sleep hardly ever
Hated baths, naps, getting dressed, leaving the house (any transitions)
Very fussy with food and didn't eat much
Talked early but not usual speech, first words were car and lion, then all the colours (obsessed with colours)

Okay first things first.

Your precious child is still your precious child no matter what any diagnosis says. I know you know that and I know what a total emotional earthquake it can feel like when an assessment is suggested. It feels like your whole world has been rocked.

I would suggest that in the early days you seek support from trusted friends / teachers at nursery/ family membersn as well as MN. Those os us who have been there will be able to understand.

For my child- well he was developmentally delayed from the very first. Slow to do everything. Was non verbal at the 2 year check. was non verbal at age 4. But has more than made up for it now. (He is just shy of 13). Did not walk until quite late etc.

has sensory issues. Sensory seeking in terms of flapping and walking in circles. major food issues (cannot eat cooked vegetables; has to have food spearate on the plates). Does not read social cues. Does not understand what other people might be thinking and gets anxious because he thinks people might be upset with him when they are not. Constantly seels reassurance that you are not cross with him. Seeks reassuarance about what you are thinking-0 it's not enough that I can drive him to school silently- he needs to know that I am not silent because I am cross. I have to narrate everything to him; 'There is a cyclist ahead, I have to pass him so please let me concentrate, it's not that I am cross I just need to focus'.

But the bonus- he is honestl he is truthful. He is so loyal. He responds so well to being cuddled and loved and being appreciated. I vocally appreciate him and all his strengths. I tell him every day how great he is. He is interesting. His special interests expose worlds to me that have enriched my life. I know everything there is to know about game shows and morse code and the Titanic and how handbags are constructed. I find it endlessly funny and fascinating and he has enriched my life immeasureably.

My DS is a treasure. This parenting journey is generally mad and exciting and to parent a child with autism is a roller coaster of emotions - some bad some good. I have grieved for the child I expected to get. If you know what I mean. But I have the child I have and he is magnificent in every way.

Ok. I would advise the following

Wait for the NHS diagnoses as it will be more likely to gain any support that your child would be entitled to by law under something called an EHCP. ( google it)

meanwhile if it’s possible not to try and seek the answer without professional advice , but channel your energy to respond to what your child seems to need right now then that may help you feel a little more in control of the situation and help your child.

you can find so much information on the National autistic society website.
google it. Xx

If your child shows distress or Intolerance to certain foods or noises, touch, sensations ect…. Don’t force anything. Be your child’s advocate and support them to access alternatives. Or escape these situations … you can support your child to cope / find ways of managing in the future, if it’s in their best interest with professional help, for now just support what you see your child needs.

If there is any language delay you may like to print off some pictures and have them in a set place and take some out with you,
keeping them in the same place for your child to show that they need a drink, food toilet ect. These are sometimes called PECS ( incorrectly as that system requires a back and forth conversation via cards/ symbols) but they are correctly also just called symbols

to introduce them you would give it with the item it represents, eg show the drink card and if you can get your child to touch it then give them the drink. works best if you start with things your child is really keen to get , eg picture of fav toy.

every child and adult on the spectrum is an individual and it is hard to predict any outcomes.

but what is fundamental is a proactive family, that are able to make the adjustment the child needs and advocate and sadly fight for what they need

xx

Loved your balanced response xx

Loved yours too @Onepotatoetwopotatoe - particularly your last sentence which is so so vital and important.

I have two boys both diagnosed (3 years) at diagnosis age. Now 12&10, ask me anything. I've been there and I was totally oblivious to autism until it was mentioned to me with my first child at age 2ish by a teacher friend. I googled and had a light bulb moment .. it all became very clear. No two children are the same and autism is very much different per person. The good news is life is going great, I have two amazing boys who are absolutely my world quirks n all. Yr 7 child has just completed his gcse maths without a blip and thriving. Having started school non verbal .. my second son is a complete sponge of history and loves creative writing. I won't lie.. the early days were bloody tough!! I'm not sure how I got through it but structure is very much key. Feel free to message me if you'd prefer, I'm very open and honest about our autism journey and have filled in every form known to man lol

Thank you so much for sharing your stories and advice everyone. They are really interesting and I super appreciate it. Sorry for the delay in responding it's all a bit hectic these days. This is my first child and I no experience of babies/toddlers so I just don't know what's typical or not. I'm constantly analysing all his behaviour and can't seem to switch it off. I am very responsive to his needs in general so he is a really happy, calm toddler but it's me that's a bit of an emotional wreck at the moment. I'm terrified.