Anyone with a young child with autism?

[LRR28]

Hiya. I'm not sure if I've posted in the right place. My DS is 3 years old and is going through tests for autism, I have been told he most likely has it but he is still undiagnosed and I have no experience with autism so I was wondering whether anybody here could offer their opinions
.

• He's scared of loud noises or noises he doesn't recognise, he will cover his ears and scream
• he won't go in the bath but loves water
• he doesn't talk at all but can hum tunes to certain songs eg. ABC song, shape song
• he has no understanding of what I'm saying to him except 'no'
• he communicates by taking my hand to the place he wants something from eg. Will take me to the sink if he wants a drink
• he is still in nappies as has no understanding of me trying to potty train him
• he can't role play with toys, just lines them up
• he rocks side to side swaying his arms to show his excitement and spins around in a circle a lot
• he gets extremely frustrated over everything and kicks and lashes out and theirs no consoling him
• he won't try foods he doesn't recognise
• he won't go into indoor places without screaming, it's like he is scared, therefore is yet to go to nursery

We've had hearing appointments, we see speech and language, awaiting appointment from paediatrician, also on the waiting list for child development and sees health visitor

Autism is very broad but he does seem to have alot in common with my niece. She is predominately non verbal, does repeated rhythmic movements, doesn’t role play, doesn’t mimic, and doesn’t like change from hot to cold (like if out in winter doesn’t like going into a warm shop), and flatly refuses to wear certain items of clothing. Plus tons more. She is fortunately very affectionate and cuddly and is pretty much potty trained now (was since about 7). She was diagnosed at two now goes to a special school that does ABA therapy. My sister has also tried stem cell therapy which costs a lot (they do not live in this country) but she thinks has helped.
It is a hard diagnosis and I think my sister is a saint. She has no partner and I hope you have a good support network. Diagnosis is the first step - there’s a lot of help out there do not hesitate to ask for it.

My four year old boy is currently on the waiting list for an autism assessment, so I’ve read a lot around autism in toddlers and preschoolers. What you describe does raise quite a few red flags for autism. One thing you can do, if it helps, is do the M-CHAT test online. If nothing else, it’ll confirm what you already know.

m-chat.org/en-us/page/take-m-chat-test/online

@Pipandmum it's very difficult to get answers as everything appointment we do attend my son screams through as he just wants to leave so struggle to chat with them, I'm pushing for home visits now as we are getting no where. I'll take a look as I'm willing to try anything

@Haworthia
Thank you I'll take a look at that now, it's difficult as we're just not getting anywhere

Yes I have a young child with autism. He is absolutely fab, the light of our whole families lives and he is perfect just as he is but don’t get me wrong he has his difficulties. Someone said to me at one stage autism is all about parenting the child you have (same as any child really). Basically that means getting to know their sensory profile (noise/taste/light/crowds etc etc) and then recognising that pushing them beyond their tolerances in these areas needs to be done with absolutely sensitivity.

Rigidity and routine, often accompany autism, are all about maintaining control in a hostile world as far as I can make out. The less hostile the world can be made around the autistic person the easier it is to relinquish some of that control. DS is great for this.

Development is often spiky so not the linear development you get with NT children but sudden bursts of development where you look at a child who couldn’t remotely do something last week and suddenly they are brilliant but teaching too requires knowing the child well and adapting to their learning styles.

Best of luck with the assessment.

@Lazydaisies
Thank you so much for that explanation it has actually helped a lot

They are brilliant over on the Special Needs board and very very supportive. Autism is a spectrum and so children present differently but it would appear certainly that your son has sensory issues.

He's scared of loud noises or noises he doesn't recognise, he will cover his ears and scream sensory

• he won't go in the bath but loves water sensory (does your son like swimming? This is how I get round it)
• he doesn't talk at all but can hum tunes to certain songs eg. ABC song, shape song non-verbal
• he has no understanding of what I'm saying to him except 'no' possibly has more passive understanding?
• he communicates by taking my hand to the place he wants *www. class="break-all" href="https://amazon.co.uk/slp/pecs-cards/xhad6mcdm7374j8*?tag=mumsnet&ascsubtag=mnforum-child-adolescent-mental-health-3646676-anyone-with-a-young-child-with-autism" rel="nofollow" target="_blank">amazon.co.uk/slp/pecs-cards/xhad6mcdm7374j8*

something from eg. Will take me to the sink if he wants a drink I'd start using PECS cards - lots on amazon - see link but also you can make your own - lots of free ones via google if you have a printer

• he is still in nappies as has no understanding of me trying to potty train him
• he can't role play with toys, just lines them up can be an ASD symptom
• he rocks side to side swaying his arms to show his excitement and spins around in a circle a lot can be an ASD symptom
• he gets extremely frustrated over everything and kicks and lashes out and there's no consoling him *frustrated due to sensory overload? not being able to express? The cards might help that. Also, I would start with a notebook jotting down/observing when this happens ie what happened just before, how long he cries for, whether anything solved it eventually. This is to try and work out what his triggers are or whether it is a natural reaction to something he cannot communicate.

Hunger/thirst/labels in clothing/too many layers/needing a cuddly toy/sunlight in eyes/noise/pain/

• he won't try foods he doesn't recognise choose your battles - give him the known quantities. Perhaps put unknown on a different plate without forcing and he might pick up a piece himself if finger food
• he won't go into indoor places without screaming, it's like he is scared, therefore is yet to go to nursery anxiety again which can be a comorbidity with ASD

Join us on this thread for chat/venting. One of us will always reply lovey.
www.mumsnet.com/Talk/feeling_depressed/3572975-Parents-of-anxious-kids-teens-support-thread-part-2
It's exhausting but you are not alone

www.amazon.co.uk/slp/pecs-cards/xhad6mcdm7374j8?tag=mumsnetforu03-21

Ach, some of the above didn't bold.
I forgot wrt toilet training - my son (not yet diagnosed, you are probably further along than I am but observed and considered neurodiverse) was not toilet trained successfully until he was 4. He still has some difficulties in that area now but has improved (he has anxiety and sensory issues but is verbal, nonetheless would never communicate he needed the loo or that he had filled his nappy. I think we had a potty and just had him naked one whole Summer but we didn't have carpets so were able to do that). Hopefully someone with a non-verbal child might have some more ideas but as I said, mine was deliberately silent on the issue. We got there eventually when he realised he preferred being dry to wet in his nappy.

@RageAgainstTheVendingMachine
Thankyou so much will take a look at the thread now and will definitely be ordering some of those cards

He won't go swimming as he doesn't like his whole body being in water, I have to bath in a baby bath

He won't touch cuddly toys as hates the feel of them, he's comfort is one of my nightgowns he's had since he was 1, he goes to that to put his face into a lot when he's upset

we went to a child development class today through speech and language, there was no other children there but he was ok for the first ten minutes and then a toy made a noise and he screamed and stood at the door screaming until we left

Everything has to be finger food as he won't attempt to use a spoon, fork and won't let me near his mouth with one which can be frustrating and messy

It's sad as it seems he has no understanding of what I'm saying to him, I've tried everything

The only things he learns himself are through his tablet, their were some number and abc apps I was advised to try and that's where he got the tunes from he also loves nursery rhymes, I hate him having a tablet but was told he may be able to learn and express things through that but instead it's become something that makes him feel calm and safe

www.amazon.co.uk/Sync-Child-Carol-Stock-Kranowitz/dp/0399531653/ref=sr_1_1?s=gateway&crid=2BNPEMCZIWGMZ&keywords=the+out+of+sync+child&sprefix=THE+OUT+OF+SYNC+CHILD%2Caps%2C442&tag=mumsnetforu03-21&qid=1563978275&sr=8-1
the out of sync child
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the explosive child
www.amazon.co.uk/Autism-raise-happy-autistic-child/dp/1409176282/ref=sr_1_1?s=gateway&keywords=the+AUTISTIC+CHILD&tag=mumsnetforu03-21&qid=1563978528&sr=8-1
how to raise a happy autistic child

Everything has to be finger food as he won't attempt to use a spoon, fork and won't let me near his mouth with one which can be frustrating and messy

DS was exactly the same. Food can have a sensory aspect to them based on both taste and textures. DS likes crunchy, he won’t touch mixed flavours like a spag Bol/curry but will eat roast dinners where flavours are separate. We just keep trying to introduce new foods accepting it will take a lifetime.

I'm not judging about the tablet LRR28 You do whatever brings any benefit - mine is a cautionary tale however, in that my 6 year old became addicted to screen time and it absolutely calms him down but to the cost of anything else so I would definitely try to limit it so it does not become his go-to. I used mine as respite but it has cost me and I also have guilt that I have thinned his cortex (too much googling) and exacerbated his issues (too much guilt).
I don't have any quick fix its, there aren't any, apart from hanging in there. I have two other children and have had to parent my son differently. That means that my non-negotiables are restricted to health ie teeth brushing and safety ie roads, rivers, platforms
The rest I am now über-flexible over as pushing things leads to meltdowns so I choose my battles.

@Lazydaisies my son won't eat those either, he's freaked out by the look of cereal also. He does like baked beans on off which becomes messy when he won't use a spoon or fork

Yep, my son eats...
bananas, apples, strawberries, fish fingers, pasta with mild tomato sauce, tuna, salami, margarita pizza, new potatoes, hummus, wraps, plain noodles, sausages, burgers plain, bacon, scrambled eggs, frozen yogurt, ice cream, occasional cereal, apple juice only, milk

He won't eat anything else - salami aside, none of the above has a strong taste particularly but there's enough there for me to go with. I no longer get upset trying to deviate and the lack of vegetables is a concern but I make up for it with fruit.

@RageAgainstTheVendingMachine
I have a feeling my son may also use his tablet as a calm down. I introduced it to make his life easier for him, it's a place where he doesn't have to get upset or frustrated and can have fun as playing with toys can lead to meltdowns and the only other place he enjoys are outdoor parks and walks, nothing indoors, we walked a couple of miles Monday to a new park he walked some of the way and pram the rest and seeing him at the park was actually beautiful it's a place where he is completely stress free (unless there's a lot of noise) he will only go on a swing or slide but he had such a lovely day it was so nice to see, we try and go to the park a lot depending on how he is on the day as some days are very bad days

And most of that is with his fingers given half the chance. We still use small spoons and cake forks which he got to grips with at 4, not before.
Is still likely to land half of it on the floor/down himself but if half goes in, I'll take that as a win. Things like fishfingers/sausages being held and dipped would probably appall others but I have no fucks to give so if he has them as finger food so be it

Well that's a positive love, that he is happy in himself at the park. Mine is off-on with the park but loves the pool. Cinema, circus, shops are no-gos. Ballpark depends on how busy it is. I have learnt when to abort a trip and take the good days as they come.

Have to go now but will bump thread for you later. Take care x

@RageAgainstTheVendingMachine
Mines the same more food on the floor and down him then in his mouth haha
My sons an awful eater
He will only go to oudoor places doesn't enjoy and screams anywhere that's indoors, I don't think cinema will ever be an option here, he can barely sit through any film, well he doesn't he barely sits down always stood up really, he only likes a couple of films like gnomeo and Juliet and deep, haven't found any other film he's remotely interested in. Thank you for taking the time to reply

Bump

The SN boards are very helpful. Autism (for us anyway) changes massively with age. It’s so much easier for a teenager to overcome barriers than a toddler. Keep him safe and happy and loved and he will grow in his own time.

(And tablets are fabulous for those with communication difficulties)

If he seems hyper-sensitive to sound, have you considered getting a pair of ear defenders for him? It's quite common for autistic children these days.

Our son turns 10 this summer, he is deaf (which is a blessing as loud noises don't bother him), autistic and has severe learning difficulties. He's not yet toilet trained. He eats with his fingers and is quite fussy about the foods. He doesn't watch any television. He still leads us to what he wants in the kitchen. Progress is very very slooow with him ...

Like your son, he loves swings and also spinning. So in addition to visiting parks, we have a large bucket swing and a spinning seat (like a one-person roundabout) in our back garden. This keeps him happy but in a safe environment.

There is a Special Needs area of MumsNet with various different chat groups if you would like to know more! www.mumsnet.com/Talk/special_needs_chat

@Itwouldtakemuchmorethanthis
Thankyou, I keep him as happy as I can I just try and make everything less stressful for him, regardless he's still an amazingly funny little boy whole family adores him just the way he is

The tablet is the only thing that taught him how to hum a tune

@EggysMom
Aw, you do sound like you're doing amazingly well, as long as he's happy that's all that matters really
I've tried ear defenders but he freaks out if anything goes on his head, including hats etc

His hair is growing so long too as won't get his hair cut without a complete meltdown, been to all different salons and even tried myself when he's asleep but still wakes lol