If not autism, then what could it be? Struggling to understand my child!

[AbbyDx]

Hi, I posted a thread the other day concerning my son. He has just turned 2 a few weeks ago and has just started a morning nursery 5 days a week which is going good so far. He is a happy loving little boy, but I am struggling to understand what could be wrong with him. I’ve suspected autism but the more I think about it & how he is just doesn’t sit right with him having autism. He can’t talk, says maybe 2/3 words, and you can’t really understand them. Doesn’t use them in conversation just will randomly say them. He makes noises all the time, more screeching and grunting he will walk around going ‘ughhh’ in a deep tone most of the time or if he tries to talk he can’t but his way of doing so is almost like a ‘eeeee eee ee’ (hard to describe without hearing it) the sounds are sometimes unbearable to hear when you have it alllll day. And makes him look kinda odd because he is a big boy for his age (bless him!) he doesn’t really know how to follow instructions, he understands like ‘come on, let’s go’ . But in most situations he just really hasn’t got a clue and just does his own thing he really needs prompting and shown to do stuff and even then he doesn’t sometimes and gets bored very quickly . The things that worry me are his lack or understanding but also the things he likes so he likes to bang everything if he finds a post he will just hit it with his hand and this makes him smile if there is a bin in the park and he walks past he likes to go up to it and touch it and look inside, and also likes to hit and splash the water with his hands, if he has a bottle or a cup he has to hit it against his high chair or turn it upside down and spill the juice all over himself. Also, little holes in things in outdoor objects he likes to put his finger in the hole. Likes to empty stuff and chuck it all over the floor and just make a mess. Shakes his head sometimes just randomly. The older he is getting I can see how different he is to children his own age and how behind he is. He is under a pediatrician ect, has anyone else had a child similar to what I’ve described? He doesn’t have any autistic traits that you would initally think of. I know there could be something wrong but he just doesn’t seem to fit the boxes of being autistic. I’m going out of my mind daily trying to help him and i feel like I’m fighting a losing battle, it’s just all so hard and frustrating! Sorry for long post. x

Have you had his hearing checked? That would be where I'd start. And a proper test, not just the GP looking in his ears as that regularly misses glue ear.

Yep we’ve had a thorough hearing test done, have to go back next week to get the high frequency tone but everything so far looks good with his hearing! At such a loss!!

I had something a bit similar with my now 9 year old boy. He also had quite a marked speech delay until the age of about 3.5 and often only repeated what we said or words from songs/ nursery rhymes rather than use his own words. He also made his own noises and squealed quite a lot, he flapped his hands and was OBSESSED with lampposts to the point where we would have to stop the car to get out and touch one (he would bang on the window so we would know!) he also amused himself by looking through coffee table books, muttering to himself rather than necessarily looking at his own books or toys, he also made some quite strange movements with his eyes... So there were a number of puzzling things going on to say the very least (and now I’m listing it I honestly can’t believe I’m talking about the same boy!) but never really doubted his understanding of language or behaviour, he was just very much his own man! What reassured me was that he maintained eye contact, responded to his name, waved and pointed appropriately and was always very sociable (though he was very misunderstood by other children as he struggled to communicate so he did sometimes retreat to play by himself).

I did receive a couple of quite unkind comments from his preschool teacher about ‘getting someone from the council to look at him’ as if he was a pothole or something which led me to change nurseries but also hire a speech therapist. She was very much of the opinion that he wasn’t autistic but that he would use language as and when he was ready to. I have to say I wasn’t entirely convinced about that but honestly, slowly he just…did. I remember one day putting him to bed and saying that I hoped he’d had a nice day. And I’ll never forget the moment he said “yes I did!” We had NEVER had a proper conversation before, I would speak to him but he would never actually respond with words. Gradually everything fell away and he started communicating more and more appropriately for his age and by the time he started school his reception teacher said she never would have imagined he’d had any sort of development delays at all. His behaviour in the classroom was never flagged as unusual and he’s been absolutely flying ever since!

Honestly I did very much expect to be told that he was autistic at many points along our journey and I’d be very open to a diagnosis if i thought anything was holding him back but we are very much an example that you can have all sorts of unusual things going on and everything be absolutely fine in the end. I should also say that we had his hearing checked quite a bit- he had chronic bronchiolitis for 2 years (from 6months of age until he was 2.5) so his ears were often checked and he did occasionally (though not constantly) have glue ear along with that. So loss of hearing at key points MIGHT have been an issue but certainly didn’t explain everything.

Sorry for the waffle! Hope it helps x

Has the paediatrician got any thoughts so far? Has he been referred for speech and language therapy?

I think it’s important to have a development assessment done as those are red flags. You don’t have to say “autism” to the nurse, you can simply say you have concerns about his development because of the actions that you have noted in your post.

It’s important to note that autism can be difficult to pinpoint because it presents so differently in everyone. My son was diagnosed relatively late at 11 years old because he is so outgoing in personality, not like the shy and withdrawn stereotype. He was diagnosed with ADHD first and the two can co-exist, presenting a complicated picture.

I work at a preschool and it does sound like autism to me, it presents differently in every child but enjoying water play is something we see a lot, the sensory seeking behaviour (making noises etc) and scheming is also a sign.

I would also get hearing checked as it won't do any harm and it will rule it out as they will probably also ask you to do this anyway (it's always our first port of call at nursery) but it does sound like more then glue ear if there is no understanding either.

To encourage speech use simple single words at first, give choices - would you like apples or bananas - even if the child cannot say this hopefully they will be able to point and if they do say oh you would like bananas etc.

When showing how to do activities do hand over hand to show what to do and keep repeating. For example a simple game could be building a brick tower. Encourage them to place a brick on top, say the colour of the brick as they go.

If he is seeking out sensory things a water and sand tray in the garden to explore this, cups and jugs to pour between containers. Throwing and catching a ball, bean bag, feathers, Pom poms etc as appropriate.

Have you spoken to nursery about your concerns?

That sounds very much like autism to me, but I agree you don't need to specify. Hearing check is a good idea as that's often asked for before either assessments anyway, if only to rule it out.

Oh I’m so glad things worked out for you in the end and everything was fine. I’m hoping I get the same result, I think all children do weird things and are a little strange and I’m trying to brush it off as him just being a toddler he is a little different to his peers but not massively. His ears are fine he’s had all the checks. I guess it’s just a waiting game to see if improves or worsens as he gets older. Thanks so much for replying. X

She just says that he has developmental delay but she doesn’t suspect autism as soon as she met him she just didn’t lean towards autism because of how present he was in the room and eye contact/engagement was there and yes then got told they can’t do anything til he’s over 2 so being re referred in October now if not having any words.

Yes I’m going through all the hoops right now he just is still sooo little, he was in hospital when 10 weeks old for unknown reason we still don’t know to this day , stayed 4 nights they suspected sepsis but never could get any results to confirm this. I truly believe that has something to do with him being so behind now. We will never know but as a mum I just have a gut feeling.

He doesn’t necessarily seek the water play and he will jump and splash in the water like the other children he just likes to feel it with his hands as well, even likes to dip his face in it sometimes and get his hair wet, haha. Thing is he doesn’t know HOW to do a lot or these things: so like you said maybe get the cups/jugs and pour water into he wouldn’t know how to do this he would just hold it or throw it back down he doesn’t copy he doesn’t know how. Likes to watch and smiles laughs but most of time he cannot do it. Yes they know he is behind and they are amazing with him, they have a ipp in place for him to help with his balance and socialising at snack time and he’s on a list for some other nursery type workers to look at him too.

I’m sorry what is scheming?

Whatever it is, and the way you are describing the sounds he makes sounds a lot like autism, don’t just wait and see how it turns out. You need to be exploring alternative communication methods with him to give him a way to communicate. He definitely needs a speech and language assessment. There are lots of options, PECS, Makaton, communication boards etc. to help him communicate with you. Focusing on Early language skills, like turn taking, shared attention, attention and listening skills would also help him. Do the speech and language service in your area do a drop in advice service at all?

I think your instinct is telling you something is off

The concerning thing is you say he doesn’t understand

Look up Developmental Language Delay - receptive language

My DS is autistic. Like your DD his speech was delayed but he had good understanding. From what you’ve written I would suspect autism.

You say nursery help him with his balance. Dyspraxia is another condition you could research. My DS has that too.

He's just turned 2, he could just be a bit behind. My dd2 was 2.5 before she spoke, the only thing "wrong" with her is dyslexia. Some kids are slower. She was super curious about the world around her and not interested in other kids at 2

Just to reassure you. If he is autistic, that’s okay, he’s still the same lovely boy. My husband is autistic, and is a wonderful partner and father. He wasn’t diagnosed as a child as his mother didn’t want to “label him” but being diagnosed as an adult has given him a second life. Initially he became much worse as he was struggling to come to terms with it and why his family hasn’t sought help for him as a child, but now he’s come through it and it totally empowered.
I would urge you to see as much help as you can, and investigate a diagnosis as soon as you are able

Please don't be misled by eye contact etc. My DC with autism has great eye contact. He certainly didn't tick obviously tick many autism 'boxes' either as he masks so well. Our first assessment (GOSH) said no ASD but a second assessment did diagnose. Now in his teens there is no doubt. Learn as much as you can about autism (and how it can present so differently) and keep a record/diary of what you perceive as differences in development so that you can then share this with anyone assessing etc.

yes I am trying everything I can now to help him I’m just new to all this I have a 7 year old boy and he’s always been fine so it’s kind of a different way of parenting which I’m still trying to figure out! A lot of the noises he makes is him trying to talk there is just something stopping him and we don’t know why!’ So frustrating

Don't ignore autism just yet, many health professionals are still stuck in old stereotypes. My DD was ahead on everything and is high achieving makes eye contact (or looks at the bridge of your nose), etc but still diagnosed at 13. For a paediatrician to say No because he is present in the room and makes eye contact is daft.

Autism is largely hereditary though so if you can't look back through the family tree and identify any 'odd' or unusual family members, anyone fabulous at maths or engineering or Great Aunt Anne who lived alone and didn't like visitors etc then it's unlikely. My family history is filled with such characters so DDs diagnosis was no suprise

My first port of call is always checkout physical things first, you've done hearing, but what about his mouth and tongue - any tongue tie stopping him from forming sounds properly?

If he can clap he can sign so start teaching sign language to him whether it's signs you make up, BSL or Makaton - Makaton has easier hand signals. It uses a different part of the brain to what processes speech.

He may well just have global developmental delays it happens particularly if he was ill as a baby. He will develop skills but it will be slow.

Schema / scheming is the pattern in which young children play - they tend to go through phases. The trajectory phase is when they like throwing things around. If you goggle you'll get a great breakdown.

I will have a look thank you!
some days I think yep 100% something is wrong then other days I’m like he’s fine you know it goes so up and down

Yes he’s had bloods taken and hearing test and also bloods for his late walking (he started walking at 21 months) he has low iron but so far that’s it.

Yes I also tell myself this too, he literally turned 2 end of August, he is mixing with children who are shy of 3, he won’t be doing the same things as them just yet whether anything wrong or not. Huge difference in development with those ages! He likes other children I mean when he’s with them he’s no different other than the funny noises he makes because he’s trying to talk to them.

Yes I will. It’s all so slow! I am scared of a diagnosis I think it does scare me for our future.

Good idea, I will do this, so much to think about and remember isn’t there.