How can I enjoy my baby while worrying about possible ASD?

[Bethymum]

My baby is 9 months and I’m fairly confident he will later be asd due to poor eye contact, not responding to his name often, very sensory seeking with behaviours such as head shaking etc, stimming quite a bit with groaning sounds and also physical movements, terrible sleeper, always active/wriggling, doesn’t smile much at all/react to smiles. I am fully aware that asd isn’t something that is diagnosed now, and with reviews it’s mostly a wait and see approach. I’m not on here to ask if he has asd. I’m here to ask how to ‘enjoy my baby.’ I’m mostly upset because I’m noticing he’s different to other babies of his age, how he doesn’t interact with me particularly or anyone and worried about the future. I want to just enjoy our time together, whatever the future holds, but I’m finding it impossible.

If you had a diagnosis now, it wouldn't make any difference to how much you love your little one would it? You would still adore them and be proud of them and want to celebrate their every little thing? You will always love them, whether they have ASD or not, and that will never change. That's what you need to focus on. Can you talk to your GP and ask for some taking therapy to talk this through with someone?

You need to parent the child you have not the one you imagined you would have. Easier said than done I know.

Enjoy the things in the moment with your child, your parenting will develop along with them. If they do get a diagnoses down the line they will still be the same child. If they like sensory things great build loads of them in and have with it.

They are all different. Some will excel at sport, some won't be able to catch a ball to save their life. Others will grasp complex sums immediately and for other children it will remain a foreign language. A diagnosis won't change the child in front of you. And your child will always be different to other kids, ND or not. Do the things he likes while adding in fun stuff you do.

Have you had him assessed by hv or gp and maybe a paed? Some babies do have enough issues to be asessed for delays etc at 9 months. Might be something else not asd. Then you can get advice from therapists. Plug into SEN baby groups speech therapy groups. Etc .
Regardless he is your child who needs love and support
So get baby to gp to be asessed to see if these issues are real concerns or not. If he does have early real signs of delays or issues you can get some help already.

Health visitors can complete developmental checks if you are concerned and keep an eye on your baby's progress. They will speak to your GP if concerned who will refer you to a paediatrician if there are any issues identified. I noticed signs in DS at that age, but he wasn't referred until he started nursery at age 3 because my HV at his 2 year review just said it was speech delay. Keep a log of his development using these questionnaires, it will help you if you do end up getting referred for assessment. HV now use these to assess development of there are concerns.

This is the questionnaire for his age

https://www.childhealthassociatespc.com/wp-content/uploads/2023/07/9-month-asq.pdf

Older ages here:

https://www.childhealthassociatespc.com/ages-and-stages/

It is hard when you see your child is developing differently to their peers, there is a grieving process you go through. I found just focusing on finding joy in my son's development of new skills as he did them at his pace helped and also watching him enjoy the world for the first time. Go to baby classes, find your local children's centre if there is one, the staff at mine referred my son to a local speech group when the HV didn't take note of what I was saying. Talk to him, talk about what you are doing with him even if he doesn't engage at this stage. Interaction, passing toys back and forth, modelling play with toys all helps. Reading books to him, ones with touchy feely sensory pages like the 'That's not my ...' books are good. Singing nursery rhymes to him with actions (libraries do rhyme time).

Have a look at The Hanen Centre videos.

My son loved this video as a baby, he actually learnt a lot of speech from watching cartoons as he got older, but interaction with you, family, other adults and children is more important.

I second what @Sirzy has written.
Become your dc's absolute expert. To use a rather irritating phrase "lean into" his interests, qualities and skills.
Really observe him. Try and ignore the lists and milestones and just really observe your precious, unique individual. Notice what captures his interests in terms of sensory stuff and follow that path for starters.

Look into schemas in play. For example if he enjoys tipping things out of boxes, try not to wish he was interested in using the content to play 'properly'. Look into what his emptying schema means in terms of learning and development. That way you get to see his unique learning and development pathway. It makes it so much easier to find joy in what he does when it's not compared to a standard model. And that applies to him whether he's autistic or not.

My DS has autism (he's an adult now, living a nice life actually and enjoying himself) and I remember being told to "enjoy him, enjoy the baby" when he was tiny. I was absolutely baffled and a bit tearful and also a bit enraged. Did they not know what it was like? What was there to enjoy? It was all so difficult and DS was so unhappy all the time. We had no idea about autism at that time, but he was a very difficult baby. Some babies are just very difficult (autism or no autism).

Honestly, it's ok not to enjoy it very much. I'm sure there will be good times. But don't feel under pressure to feel a certain way. I hope this doesn't sound discouraging. My DS has given me a lot of joy over the years and I'm very proud of him. But it's not always easy and it's OK to acknowledge that.

My main advice would be to do the stuff with him that he enjoys. Maybe massage, or sensory stuff, or music, or nature/seeing animals? Whatever floats his boat, even if you can't see the point of it. And give yourself a break when you can. You need time for yourself (not easy, I know). Give yourself a break in every sense. It sounds like you are doing a hard job and doing it well.

Second what PP says about meticulously recording milestones, words, social smile, number of spoken words at 9 months and 12 months etc

I think you are massively overthinking this but do keep a note

dc1 I am STILL asked these developmental details and they are nearly 18; most recently by a clinical psychologist

dc1 - lovely social smile, excellent language, diagnosed asd on nhs aged 7 (and very much ND aged nearly 18)

dc2 massive developmental delays, extensive stimming. Now a lovely, kind, high achieving …. NT 14 year old who stims a bit