Will not accept possible ASD diagnosis

[Chocsaucee]

Hello,

I have name changed as some of my previous posts being linked to this would likely be outing.

I have known deep down that our child has displayed autistic traits for a while:

• Language delay
• lines up toys/spins wheels on cars
• Chews on everything
• Does not wave/point
• Sometimes walks on tip toes

He does not have every trait - he responds to his name, makes eye contact, smiles at me when I smile at him etc. however due to the above he is now on the waiting list for a formal diagnosis.

I have found it challenging - I alternate between taking it in my stride to being devastated for him (I don't mean to offend anyone) that he may have a tough life. I worry he will be bullied for example.

Adding to my worries is his father. He will simply not accept that his child could have ASD. He seems almost angry at me about it. Has retreated into himself and will not talk about it, has completely ignored the situation.

I feel utterly alone and down about the whole thing.

Those with autistic children - can you please share your experiences over the years and how their life is now?

That’s not many traits. Re chewing: depends how old and whether others are doing it in class. The whole of reception was in DCs year.

Tip toes is - I think - an important one, but rarely gets picked up

Thank you - it is what then speech and language therapist picked up on in his initial assessment before beginning regular speech and language sessions. She said he also didn't mind that they were with him, interacting with the toys but he had far more interest in the toys then he did in them. That he also did not look up at her as in to say 'move out the way' when she was sat next to him and interrupted his pattern, when he was creating patterns with the toys, rather just continued his line/circle around her. They also said, although he makes good eye contact with me, his eye contact with her was fleeting.

They asked if he plays with other children. He is fantastic with his older brother, he chases after him if he starts running, jumps on the sofa if he does etc.

He is nearly 3 - but was 4 months premature.

He does not always tip toe. He sometimes does for brief moments then walks normally.

I guess we will wait for the official assessment.

I am just struggling with it - and struggling even more with DH who is really not onboard at all.

Autism has such a broad range of presentations. The NAS has some good information. My son is very much what was previously ‘Asperger’s’ presentation and my husband isn’t angry but also wasn’t completely convinced and thinks it’s ‘mild’. I have a lot more knowledge and experience in this area and it’s difficult (and frustrating at times) but I think it comes from a place of thinking autism is confined to his opinion of what it is/looks like and my son not fitting his ideas around that. Would a lack of understanding be impacting him or is it that he sees you as saying something is wrong and so directs anger at you?

He is a natural worrier - if there is something to panic about he will.

It will also be him not wanting other people to think there is something wrong with his child.

My daughters dad still doesn't accept it she's now 16, I left him when she was 3 due to how dismissive he was towards her, she now dismisses him, not being accepted for who you are by someone you love is beyond hurtful its actually detrimental to that person. If you get a formal diagnosis tell him to get on board or jump off you will spend your whole child's life advocating for them you will both need a safe space when you can just be family and your child to totally unmask or the mental health side effects will be harder to support than autism alone.

Have an autistic child who most people wouldn't pick up on and I worry about them especially around social interactions but actually just now they have a great set of friends, are doing really well at school etc. I think my DP finds it harder to accept the lack of some of the things we struggle to do as a family due to what our child can cope with. Parenting feels more exhausting compared to with my NT one but we have a lovely relationship and they are happy. I agree with PP about getting on the same page as it is hard and harder when you don't agree on parenting - my DP gets the diagnosis but I think he should modify his approach more to take it into account

Your child is still quite young - at that age we had some signs but equally a lot of it could be explained away. Our dd was premature as well, so being on the tail end developmentally was somewhat expected. It was when dc started school that it became much more undeniable that neurodiversity was present. We’ve just received a diagnosis age 7, and by many standards we were ‘early’ getting her assessed - private assessment accelerated things, and having done research I knew that ks2 is where lots of girls start to struggle, so wanted to get ahead of that so probably sought assessment earlier than many.

DH was really dismissive until very recently - some pretty derogatory language used. DD was ‘quirky’ but we weren’t seeing massive issues in part due to being at a school with small class sizes and ultra supportive ethos. He’s been much more accepting since getting a proper write up from the psychiatrist. I think having all the criteria and evidence written out helped, and also there are a number of characteristics described in the report that he recognises in himself / from his childhood, which I think made it more tangible and less frightening. I think he was approaching it from a stereotyped perspective on autism and then catastrophising a bit, but now realises (at least partially) that he might also have some autistic traits and it isn’t all bad news.

Absolutely! I have a similar situation.

With my son being autistic, I have met some local parents who are in the same boat and it's made the world of difference. Although every single one of our children are different, the spectrum is huge! We all have challenges that neurotypical families don't experience. At the start of our diagnosis journey, my DH was adamant it was because of Covid, he couldn't socialise with others. But I knew, I was 100% sure he was autistic at 18 months old. As time has gone on, my son is more 'obvious' I suppose. Doesn't speak, stims, strips, bolts and my husband just slowly accepted it. He attends an amazing special needs school and his dad now knows it's just how he is and accepts it. Took quite a while and I think when the professionals say the same... it sinks in more.

The big things to look out for are stims, hand flapping, hair stroking jumping up and down when happy about something we're the big give aways in our experience. Very fussy eating. When our daughter was a baby she hated being passed round to other people, she would immediately cry and she was very afraid of old people when she was a toddler, even now at 5 years old she doesn't like to be in a room at the same time as her grandfather.
Also regression, alarm bells started to ring for us when our daughter was around 18 Months old and stopped talking just seemed to lose what words she had overnight and they didn't come back. She didn't really start to use words again until she was 3 and less than before.
It is very worrying having an autistic child, ours is going to need significant help for the foreseeable future, and the older she gets the more obvious it is how behind other children she is. You just have to be very, very patient and be aware of situations that could case problems and try to manage them ahead and stay positive for them.

I have woken up with a new view on it. I cannot predict the future. I am also aware I might feel upset again at points and that is okay too. No one wants their child to have a hard time do they.

My son is so happy, he loves rough and tumble games with his dad, he loves to go on the slide and to climb, he loves playing with his older brother, he loves cuddling me and going through picture books. He loves peek a boo games and hide and seek. He loves swimming and soft play. He loves running along the beach.

And just thinking about all he went through just to be here in his early life - all I can ask is that he is happy. I just hope society is kind.

I myself have OCD which apparently is now classed as neurodiversity. Some of the most interesting people I know have things like ADHD etc. - I just have to think different is not less than.

Hoping his dad comes round to this way of thinking!

This is often the case - with the dads not at the same stage as the mums. That's generalising massively I know but HCPs often remark on it.
Think of it as a journey and you're just a little bit further ahead than your DH is. It's frustrating but give him time to catch up (as long as it's not detrimental to your DS). Sometimes people need support while they are in this denial stage although it can be vexing.
Don't let it pull you apart. I think once there is an official diagnosis it becomes easier to accept.