So sorry, this must be the longest post ever. I just thought I should give some background before going into my rant.
My lovely just turned 3 year old son has obvious autism. His eye contact is sporadic, he answers to his name less than half of the time and he rarely looks at people when he speaks to them. Although he has enough vocabulary to label most things correctly, he cannot hold a conversation beyond answering the simplest of questions like "do you want some milk?". He will make statements about things, ie "daddy has gone to work" but you can't actually have any back and forth conversation with him, sorry if I'm being vague but I find it very hard to explain what it's like.
He uses the pronoun "you" about himself all the time, ie "you did a wee" when he means that he has done a wee. He doesn't understand concepts like "when" - for example (we're potty training him at the moment) he'll get off the potty, having done a wee and I'll say to him that when he needs a poo, he must get on the potty. And he'll get back on the potty because he doesn't understand "when" or "if - he thinks I'm instructing him to go now.
He repeats things over and over again rather than saying them just once or he'll repeat what you say to him rather than actually answering. Or he'll parrot phrases he's remembered from the tv. If we are out with other people, he will say "hello! How are you? Hello! How are you? Hello! How are you?" over and over again, directed at the room in general but he won't answer people if they speak to him directly. Or he will just babble incoherently.
He also flaps his hands when he's excited. He often walks on his tiptoes. And he doesn't realise when his dad and I are telling him off. He doesn't respond or he laughs, even if we are shouting at him (I know it's awful that we ever do shout at him). We will tell him over and over to stop doing something but he won't stop, even if he's being screamed at. He just thinks it's a game. Basically, he can't tell if someone's angry with him. And he can't tell if someone's sad. If he sees someone crying, he doesn't realise they're upset. To give an example, I've been crying my eyes out this morning through frustration and worry and he looked at me and said "mummy is happy." I said "no, mummy is very sad" but it meant nothing, he just kept smiling and carried on playing.
He doesn't show much interest in other children, even his cousins who are of a very similar age. He never asks "why" questions like other children his age do.
I know all of this sounds very minor compared with children who have sensory issues, meltdowns, strong need for routine etc but his development is not typical. He does not relate to people the way that most children his age do, regardless of level of vocabulary. It is so hard to explain what I mean! To put my finger on exactly what it is that is so "off" about his interaction.
Anyway, he was referred to a speech therapist at his two year review as some of his pronunciation was behind where it should be. He saw her a few weeks ago and she said there were no concerns about his speech at all (his pronunciation improved greatly while we were on the waiting list for his appointment) but that some of his interaction was atypical and that she recommended that he was seen by a paediatrician so he could be assessed further. And after he started preschool a few weeks before the end of summer term, his key worker mentioned to me that there were some issues with his interaction and eye contact although as it was at pick up time, she didn't have time to go into further detail - anyway she's asked to meet with me when he goes back next week, so hopefully she'll be able to explain more then.
Anyway, he's seen a paediatrician a couple of weeks ago and she said that we are at the information gathering stage. That as he doesn't have any instant red flag symptoms like total absence of eye contact or sensory issues or long lasting tantrums, she can't either diagnose or rule out an autism spectrum disorder at this stage.
I feel very reassured by the fact that DS's key worker and the speech therapist could apparently both see what is so blindingly obvious to me because NOBODY else - not DH or any of my or his families - can see that there is anything amiss with DS's development. It is so frustrating to be told that he is fine, he's just like all the other kids and that I'm imagining things. DH even came to the paediatrician appointment where she recommended further assessment but he is still insisting that DS's interaction is completely typical - it bloody isnt!!! DS is completely unable to interact with other children and he is not "fine with adults" as DH says, he still doesn't make eye contact 80% of the time, he displays very little joint attention and he cannot respond to conversation.
Yesterday, DH's nieces age 6 and 4 came over with their brother who's nearly 3. DS has known them his entire life and sees them frequently yet he could still barely look at them and couldn't speak to them at all. He played on his own even though his bigger girl cousins were trying to get him to interact with him. He's actually very fond of the 4 year old and when she sat down next to him on the sofa, he gave her a cuddle (although not looking at her or speaking to her). Anyway, the 6 year old started saying things like "why does he never give ME hugs?" She has a tendency to say slightly mean things about DS, drawing attention to his differences in a "why's he being so weird?" kind of way. So I said to her that DS finds some things, like talking and playing with other children, very difficult and that it's important to be patient and kind to him because of this (and that I know that she always is).
After they'd gone, DH had a go at me for saying this as he thought it was wrong to tell his niece that DS was different in any way as it sounded like I was saying he was inferior and that his niece would pick up on it in the wrong way and think less of DS. I tried to say that I thought I was doing the right thing by telling her that people need to make allowances for DS finding socialising hard, so she'd hopefully be a little more understanding towards him and perhaps not make so many "why's he doing that?" type comments.
Mentioned it to my mum today and she said that she agrees with DH, that I was wrong to say anything referring to DS's difficulties (that she thinks I'm imagining anyway) to this child and that I should have just told her to "be nice". And that any issues DS may have will be so minor that they won't hold him back in any meaningful way.
Anyway, I just feel so sad for DS and scared for him, more for what the future may hold than for how things are now especially. And frustrated and angry that nobody else who is close to DS can see what is so fucking obvious - that he's a little boy who has major difficulties with communication and interaction and that this IS a big deal. And I feel totally out of my depth, I don't know what to do to help DS. I honestly feel completely lost and scared and also alone and undermined because of DH's and everyone else's denial.
Has anyone else been in a similar situation? How do you cope with everyone telling you it's nothing when you KNOW it's not?!
Apologies again for the post length