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

yes I suppose, he physically is fine I think we’ve had his hearing checked and blood tests he is due for a eeg and a mri scan but god knows how long thatll take. So do all children go through the scheming phases?

He sounds a lot like my 4yo - especially the noises! Mine is autistic with global development delay. He's the happiest little soul - often smiling and laughing but non verbal. Loves exploring the environment in different ways like banging, throwing and tipping stuff over (not aggressively just curiously). No real understanding of words yet. I think autism is worth investigating!

Don't be scared of diagnosis - it doesn't suddenly change your child. It will possibly open up doors though like access to a specialist school instead of mainstream which might be more suited to him and is incredibly hard to get a place as children get older so getting it from the start is a massive bonus.

Maybe play a mirror game so he sits facing you on your lap and make different facial expressions, sticking tongue out etc and seeing if he copies, or you copy him Build from that to making different sounds and seeing if he will replicate it. He may need to see the mouth formation. Some children need help learning how to make the sounds and having their mouth put in the right position but I think that's a job for S&L.

You sound in denial, it’s very clear from your posts that it’s Autism, combined with a sensory issue, with possible OCD.

he will not grow out of it, and your posts read as though you want people to come on here and reassure you that it’s not Autism and he’s like any other child.

minimising a child’s difficulties means they don’t get what help and support they need.

Gently, what here is leading you away from autism? These are sensory explorations that you describe and are very typical of autism in toddlers. This manifests in a fascination with the sensory world and significant language comprehension difficulties, amongst other things. Is there something else he is doing that makes you think it's not autism?

Remember autism is a wide spectrum.

A diagnosis will bring understanding and help, it won’t change who your DS is.
My DS has multiple diagnosis - he passed his GCSEs, he has found a hobby he loves and excels in. He is actually quite sociable too.

I may be in denial, because this stuff is hard to come to terms with but I have everything put in place for him to get the help he does need. I’m sorry where did you get the idea he may have OCD? I find your comment quite rude I came on here to get advice or any experiences from other parents which most of them have given, unlike yourself so if you don’t have any actual real life experience with this kind of thing then please remove yourself from my post.

Honestly I don’t know, maybe I just don’t want it to be autism. He plays and acts like any other child most of the time, since being in nursery he is listening more and understanding more points at everything tries his best to talk, I maybe feel like he is just ‘behind’ rather than their being something wrong with him permanently. I suppose I have hope that he will catch up and it’ll all just be an old issue in a few years. I am helping him and do have everything put in place for the time being though, of course I’m not just ignoring the issue and hoping it goes away.

have you had your forms yet for the 27th month assessment? My understanding is that this assessment is often used as a starting point for any referrals such as to speech and language

Sorry I haven’t read the whole thread but a lot of what you’re saying does sound very much like autistic traits.
The pediatrician may be reluctant to name particular conditions until they are confident to give a firm diagnosis.
Each child with autism will be different to the next, whatever the diagnosis(or not) look at your child as an individual and ask others to do the same.
Rather than think about what the diagnosis may be, it will be helpful to focus on support/adaptations your child will need to make progress on his terms.

And also having autism definitely doesn’t mean he has something permanently “wrong” with him. That’s quite offensive actually.

He sounds quite similar to my DS who is autistic although Ds had lots of other autistic traits alongside his communication issues. Does he have a special interest? Eye contact ok? Does he return a social smile? Xx

I do have experience in this, half of my immediate and extended family have SEN, with varying levels of it, which is why I’m saying to you that the child you describe will not grow out of his symptoms.

you came on here for reassurance that you have a “normal” child and you’re tying yourself up in knots minimising his difficulties.

when you say you have support in place for him, has he been referred to a Paediatrician, Occupational Therapist, Speech and Language Therapist, family support unit which teach you about SEN conditions and how to manage them?

it’s best to get him in the system for these things now, don’t delay it as it delays the support he needs for school etc.

and I wasn’t being rude to you, I just wasn’t agreeing with you whilst you convinced yourself that your child was the same as a Neurotypical child.

dont cherry pick what you want to hear, the only person that suffers is the child.

Yep eye contact there constantly, smiles back and plays pretend games constantly always engaging with me and others. Doesn’t really have a special interest no just likes everything but his toys haha. Xx

What other traits did your little one have?x

Definitely go back. My little boy passed the high and middle frequencies with flying colours. They thought he was getting tired when they did the low frequency so we came back to repeat that test but they weren't expecting any issues. Turns out he wasn't bored and losing focus, he can't hear low frequencies.

Oh really? That test will be interesting then. In a way I kind of want something to be picked up to sort of explain what’s going on, does that make sense? I don’t mean that in a bad way, just having no explanation is so hard and disheartening for us all!

I totally get what you mean. My little one had really good understanding so noone really thought he had any hearing issues. He was just very delayed with his speech. Now it makes sense, and he may need a hearing aid over winter as his hearing will get worse with all the winter colds. They aren't doing anything about it as it's not bad enough for grommits or anything like that, but it does help us understand the situation more and means his preschool teachers make sure they have his attention before talking to him.

You ask what traits our autistic children had... and our DC actually had no obvious traits in the early years. They met all milestones etc. (in fact some early, including extraordinary early speech) but there was a family history of atypical autism and I began to see similarities with those family members, more to do with actually perceiving the world differently. Traits slowly became more and more apparent over the primary years (as the gap widened with their peers) and they began to struggle.

If a child is already showing delays/traits at 2/3/4 years I would very much expect them to receive a diagnosis (of some kind) sooner rather than later so I think you do need to be prepared for this (and develop the sharp elbows that SEN parents need to develop sadly...).

Do not leave referrals etc. up to nurseries, schools etc. to make. You will need to take charge of all of this otherwise you may fall between the cracks.

Also, as a PP says if a specialist setting is going to be more appropriate than mainstream, the earlier you get a placement the better as it can be very hard to get a place further down the line when these schools are full as they are so in demand.

Your description is very much like autism.

But they way you describe his language makes me think of developmental language disorder. Have you tried using pecs, pods book, pro logue on tablet? It's really helpful for children who know how they have to communicate but can't.

Helpful for DLD as well as ASC.

I agree with you that it's best to have a referral and all round assessment of his skills and delays and early help with these. If there's a diagnosis he'll get one but lots of assessment into what can help is far more important.

He sounds great fun though - I'm in my 40's and wish it was still acceptable for me to dip my head in puddles 😂

hahaha, he loves doing it! Finds it hilarious that his fringe gets all wet, he is funny!
yes bless him it’s so hard to see him try his best to talk and just can’t I will try all of those that you’ve mentioned I have never had to deal with this before so really haven’t a clue what I am doing, I have a 7 year old boy as well and he’s never had any issues so it’s all so scary! Thank you x

Schema (sorry misspelt it) is basically a repetitive pattern of play, it is how children learn and if you look closely most children will do this to some extent especially when younger so it's not a sign of autism as such but it seems to be more obvious with neurodiverse children in my observations.

Your son sounds like he is a trajectory schema - interested in how objects move - often throwing items, exploring water etc. This is a schema often seen with babies and it's their way of seeing how things work.

If he is behind, be that speech, understanding, socially, I as a nursery worker would always say 100% to refer (especially as waiting lists can be so long) we have had a lot of children that haven't spoken at 2, I would say a large proportion are then speaking before starting school so it can take some children longer and speech does effect most other things in a child's development, it is a base of the pyramid so to speak, so he would seem behind in other areas. However if he is not understanding what you are asking of him sometimes and he's not engaging in play properly these are signs of something more I would say.

Also just because a child is autistic doesn't mean they will not achieve or will be held back, there are many functioning autistic people (myself included) who have done very well and early intervention is key to this! Get as much support as you can so that he catches up, one day it will all click and it will come together.

In regard to not knowing how to play this is why simple hand over hand actions are great, you are showing him what to do. I do this day in and day out with children who don't always know how to use the toys be that something simple like to pour the sand instead of throwing it or how to connect construction toys. So say a child threw the sand I would say why don't we pour the sand instead, I would then show them by pouring the sand by the spade into a cup for example. If they then went to throw the sand I would then take their hand to pick up the spade and help then scoop and pour the sand and then praise them, using simple language such as spade, scoop, pour as I did each stage. Once they get this simple step I would then perhaps introduce a water wheel to pour the sand into to make it spin. Again showing them and hand over hand if they needed it. Once they can say single words you would then encourage them to join words, blue cup, pour down, spin round etc.

DD1 was very much as you describe. She walked at 22 months. It took 45 minutes to do a 10 minute walk home from preschool because she had to do roly polys on every patch of grass, kiss and say goodbye to every bin, sit on every wall...

She wouldn't play with toys, as such, but she would explore them. She would try to dismantle her highchair, looking at where the buckle slotted into the seat. She would get a pencil and try to unscrew the screws on her toy door. She loved water, getting messy, splashing and pouring liquids from bottles.

DD1 did have more language development - she would use the function of things rather than their name. So she would say 'I want bowl eat' (I'm hungry) or 'It pink and it go weeeeee' (slide) or 'chicken with handle' (satay stick).

DD1 was initially diagnosed as having global developmental delay, alongside a brain malformation and epilepsy. Then when she was 5, that became moderate learning disability. She went to special school, so the paediatrician wasn't too hung up on labels because her needs were met. She eventually got her ASD diagnosis at 15.

The ASD thing is very stereotypical. DD1 ticked so many boxes but because she was a girl and was (over) friendly, she wasn't referred for assessment. It was only once she got to her teen years and everything got very difficult that they suddenly said 'ahh....ASD....'. Now, at 18, she presents as very autistic and social relationships are the thing she finds the most difficult.

I would suspect Autism from your post. Breaking it down here is a list of autistic traits in your post:

Delayed expressive language.
Not using language functionally (just saying the words randomly rather than to mean something)
Delayed receptive language
Sensory seeking (making noises, water play, hitting objects, shaking his head from side to side).
Lack of attention to activities not of his choosing.

And difficulties you mention that are not Autistic traits:
Speech difficulties (the words he says being difficult to understand).

I have taught a 3 year old similar to how you describe and he had Global Developmental Delay and Autism.

Otherwise than Autism other diagnosis could be a chromosome disorder? Or something like developmental language disorder/ verbal dyspraxia with autism.

"He is a happy loving little boy, but I am struggling to understand what could be wrong with him. I’ve suspected autism."

Having AUTISM doesn't mean something is WRONG WITH YOU.