Suspected ASD but wrong?

[Elb94]

Hi! I don't really know where to start but I feel like I've been on a roller coaster of emotions for the last 7 months and it's a lonely place so I thought asking here for some opinions might make me feel better.

For a bit of background: I have a wonderful 22 month old boy who from around 15 months old I started notice some "red flags". He wasn't saying any words and had even stopped babbling, he pretty much went silent - he did have one word at around 12 months which was "mama" but this was never intentional towards me, more of just a moan if that makes sense, and then that word disappeared about a month later. I started to notice that he wasn't responding to his name, pointing, no gestures, he would hand lead and his eye contact had reduced. He also wasn't tolerant towards other children being in his space and would tense up if they came near him, including his cousins. We did the mchat with him and he scored 12 (high risk). By 18 months things hadn't improved so I rang the health visitor and after an observation, she referred him for a hearing test, speech and language, play therapy and to the community peaditrician. This was in October and we are still waiting for the hearing test but have just started play therapy.

Around Christmas time we received a report from my son's nursery (he attends 4 days a week) and it was a very basic report but they had said that he can communicate his "basic needs" which through me completely as he was still not talking at home at all but according to nursery, he could tell them when he needed something?! After a discussion with nursery, we found out that he had started to say words such as "star" and 2 other words but they had also noticed that he stopped saying those words (I assume a regression with language again?) and it was at this point we had found out that he doesn't interact with the other children at nursery and prefers his own space - there is a teepee in nursery that he spends a lot of time in, he tends to play and then go back to his teepee for a sort of "chill out" before playing again.

Fast forward to the beginning of February and I noticed some green goo leaking from my sons ear, so I took him the GP and was told he had an ear infection (he's had another one since then too). After this 'leaky ear' its like my son has started to explode with language, he can say "car", "go", "star", "teeth", "bye" and "cat" and a some animal sounds like "quack" and "roar". I'm starting to wonder if some of my sons issues could be down to his ears? But we are still waiting on a hearing test and who knows when that will be! In the last week he has also started to point and wave "bye" in the appropriate way, whereas this has always been very hit and miss. I wouldn't say he looks back at me to show me what he's pointing at, but he's definitely using his finger to point whereas only last week he would use his whole hand to point.

One thing I have noticed with him is his interest in numbers, letters and shapes. He can count 1-10 and recognise and identify the numbers in different orders/settings and he's been doing this since a young age. From around 12 months he would stack blocks with numbers on in the correct order and I never knew how he could do it, until now I've realised that he's been able to recognise the numbers! He's also started to identify letters in the alphabet and enjoys looking at shapes. I've read up on hyperlexia and it does seem to match my son.

His interaction seems to have improved also, he has a cousin the same age of him who he used to not tolerate and would just avoid/ignore him but they see each other pretty much every week and now appears excited when he sees him and will hold his hand and copy what his cousin does etc. With affection, it tends to be on his terms with us and even taking him to nursery, he doesn't turn around to say bye to me - he just walks into nursery with his teacher (I can only describe it as a very robotic handover haha) but he loves to sit on the couch with us and squeeze right into us! He does some pretend l play, like using an object as a phone or or pretneding to drink from a cup or pretending to eat "food". He still hand leads sometimes

I haven't noticed really any sensory issues with him and he's very flexible with routines. He can struggle with transitions but I don't know if this is just typical toddler behavior? We have had some meltdowns that have lasted towards 40 minutes but we are unsure what has triggered them. The play therapist has had two sessions with him and he has responded really well to her, in the first session she said he had some "quirky behavioirs" that she wants to work on with him, but then his second session I asked what these quirky behaviours might be and if she has noticed anything and she didn't really answer my question about the behaviours, she said that in her opinion it was mainly language as he didn't have a "meltdown" during transitions of activities.

I just don't know what to think anymore really, I feel like im wasting everyone's time to be honest and I feel like I've just over reacted thinking there was something wrong! I don't even know what I'm expecting from this post in all honesty, I just feel lost and lonely and I know I'm not enjoying this time with my son as much as I should as I'm just over analysing everything. I feel like we took two steps forward with the health visitor, and now one step back with the play therapists comments. It's a strange feeling, as obviously I should be happy that my son likely doesn't have any struggles but then I cant help wondering why he does some things in particular ways! I'm wondering whether it's worth pursuing speech and language privately if his issues are solely language according to the play therapist? As the waiting list for speech and language is huge!

So sorry for how long this turned out to be and i appreciate anyone who has stuck around and read it all!

[TomeTome]

I think that you need to think about what the different outcomes would actually mean. If he has asd, or glue ear, or a language delay what would that actually mean to how you live?

[Elb94]

Thank you for replying! Yes I can see what you mean - I guess I worry about the way I'm parenting if that makes sense? If I'm giving in too easily or on the other hand, if I'm putting him in situations that are genuinely distressing for him. I'm a FTM and I guess the worry and guilt of whether i'm doing the right things by him is taking over!

[Geneticsbunny]

All good mums spend most of their time worrying if they are doing things right. You have spotted there might be an issue and it is being investigated so you have done all the things you need to. Now go and enjoy him. Run around outside, splash in puddles play with play dough, whatever you like doing.

[Elleh87]

Hey @Elb94,

I am in the same boat, my DS (2.3) had grommets fitted in Feb! His speech is slowly getting there but his Creche has asked for a chat because he is still showing some ASD flags! He tends to play by himself in Creche, but plays at home with me and his dad! And he loves playing pretend!

however, he can count to 20, can rearrange his numbers in the correct order, is obsessed with the Alphabet and knows the sound each letter makes, ( all a bit unclear, but he thinks he is saying it right, say if I said what letter says ssshhhh he will say S, or what does Elephant start with he will say E).

I just stumbled on the Hyperlexic thread and I think that is what my DS could have too! I am very confused with it all and am trying to just play and enjoy him instead of worrying so much!

[CadyEastman]

DS & I are both Hyperlexic @Elleh87.

I'd taught myself to read by 3 and DS was talking in small sentences by his first birthday.

Just encourage his interest in numbers, you can usually find some simple number games on Pinterest or just go for walks and talk about the numbers on doors.

Have you had the chat with Nursery yet?