Struggling to come to terms with potentially having 2 ND children

[everybodytidy]

I have 2 gorgeous, happy, clever boys, aged 2 and 3. Father and I are separated but he has regular contact and a good relationship with them. I've always had my suspicions that both might be on the spectrum, but everyone around me said I was being silly and worrying too much. They both attend nursery who never mentioned anything either. They now have a new childminder and she's called me to flag her concerns, with her 23 years experience she's pretty convinced both could be ND but especially the older one. I agree with her, I'm happy that someone else shared my concern and I can get the ball rolling, with her help to get them some extra support.

But god, this is hard to swallow. I just don't want them to suffer, I'll support them the best I can but it's a big scary world out there and I can't always be there to hold their hand. How do other parents handle this? Where do I go from here? I've so many questions and no one to ask, I've raised concerns with the gp before and they have been absolutely useless. I guess I should contact the health visitor. I'm going to set up a meeting with the nursery too. Is there anything else I should be doing?

Thank you to anyone willing to share their experience

Also, could this be my fault? With the stress of the separation and looking after them largely on my own, I've used a lot tv. Could this have contributed? Not that it helps to ruminate...

No one can answer this for you unfortunately.

My DDs ASD did not come with any challenging behaviours or regression in skills she finds the secondary school environment challenging but academically she is gifted so we didn't have those challenges. She is affected massively by audio sensory overload and spontaneous changes in routine, she restricts her food outside of the home and doesn't like eating with people but actually eats a wide range or food at home and likes going to grown up restaurants that are quiet ie won't step foot inside a mcDs or Pizza hut as too loud. Her ASD impacts her far more than it impacts me and noise cancelling headphones are essential accessories to allow her to access the outside world. On my part it takes more mental load, being zen and having patience and planning everything to the nth degree.

But comparing my and DDs experience of ASD who I have no doubt will go to university and live independently to children with PDA, who are non-verbal, incontinent, have additional learning disabilities is like swings and roundabouts - both playground rides but totally different.

What are you particularly concerned about?

No, I'm quite sure it's genetic.

It's pretty much agreed in my family that none of us would be NT given the chance. So don't run away with the idea it's all negative, either.

Practically speaking, getting the ball rolling on assessment before starting school will be a huge plus.

Autism is genetic, so it’s nothing you’ve ‘done’. The clues might already be there in your family/ExDH’s family; are there any signs of neurodivergence? Any family members who struggle a bit with interaction/anxiety/behaviour?

DS1 (nearly 11) is autistic with ADHD. He’s genuinely a great kid, and doing brilliantly at school both socially and academically (he is medicated). I’m sure there will be ups and downs but we work with teachers to support him in school, and allow him plenty of down time (and screens!!) at home.

Both my family and DH’s are FULL of neurodivergence I’m fairly convinced I am also AuDHD, like DS1. I believe DS2 takes after DH, who is more classic ‘Asperger’s’.

I can't see that it would be helpful to think what may/may not have caused it. If you think they may be watching enough TV to be bad for their development, then reduce it. But guilt is not useful (except as a motivator to make a change where one is needed).

At 2 or 3 it is hard to get a clear diagnosis, which is why most professionals just don't want to have the conversation at that age. If they are ND, I assume it isn't something severe/obvious if others have not picked up on it, so may only have a minor effect on their lives.

My eldest has ASD that is "mild" (not the terminology that should be used really, but you know what I mean). It doesn't make her unhappy. There is some extra support that she has needed but we have worked with the SENCO at her school and she doesn't need any support any more and is happy at school and at home. My DSis is "more" autistic (someone will come and lynch me for such terms at some point...) and did struggle with social interactions at school/Uni. But she's a very happy adult - she works in IT with lots of introverted people and she loved that her job is now almost entirely remote. My life would be her idea of hell, but she's got her niche and she's very settled. Her partner finds her honesty very refreshing!

Your next steps will depend on exactly what you mean by ND. What and how severe may not be easy to determine yet. Treat them with love as you would with any child and respond to their needs as you can.

Neurodiversity is just that, non-typical neuron development this happens in the womb and is nothing to do with anything you have or have not done. Their signs of their ASD may show up more if they are in a more stressful situation however, so very common for it to become worse with the transition of different school stages.

What is quite interesting though is that scientists believe they may have identified a bio-marker that can indicate autism in the womb (although it's still early days) and my own DD had that same pattern - at my 2nd trimester scan DDs had was found to be long and thin like a rugby ball shape, I had a tonne of extra scans and then it randomly changed and developed normally in the third trimester which is the same pattern that had been noticed in babies later diagnosed with ASD

Wow I misspelt the key word there her head was rugby ball shaped

It is 100% NOT your fault, if they are autistic, their brain will have started developing that way before they were born, and it was probably genetically determined from the moment of conception.

My eldest (6) is diagnosed autistic and my youngest (3) is on the pathway to diagnosis, and honestly it's not nearly as terrifying as I thought it would be 3/4 years ago, when our journey started. Things I've learnt along the way

Embrace it - don't try to minimise or make them into NT kids if they're not, they may well be wonderfully different kid, and that fine, hard work but fine. Go down the rabbit hole of special interests with them, discuss and try to understand how different sights, sounds, textures etc make you and them feel, go to autistic/ neurodiverse groups and stare down anyone who raises an eyebrow at stemming, ear defenders or chew toys.

Build a team of people - it's great you have your childminders support, you will probably spend the next year talking to health visitor, school/nursery senco, pediatrician, speech therapist and more. Try to get them all on board, they're all working to help your DS in different ways, the more people pulling together the better support you can get.

You will spend a lot of time doing paperwork. I was filling in forms for the best part of 2 years - development observations, EHCP, DLA, start your research early as it gets pretty intense if it all comes at once.

Change the environment not the child - this one isn't always possible or appropriate but when it is possible, go with it. Eg. If noise upset them get ear defenders or keep things quiet insted of trying to make them get use to it. If mainstream schools to busy, push for a placement that works, if partys or outings are to much, don't go. Once we cut out all the changeable stress factors, DS then had capacity to deal with the things we couldn't change.

Patent the children you have, not the children that society thinks you should have. It's not a disease and plenty of us adults are happily neurodivergent. Follow some people online and see how good their lives are. If it means letting the small stuff drop to avoid meltdown, giving your child food that isn't touching and different for each one, avoiding places that they can't handle, making sure you have headphones and sensory chews to hand , not making them play with others etc then so be it.

Thank you, you're all such wonderful people! This is has really settled my mind. Autism runs in both mum and dads family so it was always a possibility. It doesn't seem to be especially "serious" right now (not sure of the terminology.) They have wonderful personality's and a diagnosis wouldn't change that so I shouldn't be afraid. The tv thing is something we're always working on and it's gotten way better over time as I've learnt how to be a better parent.

I have three my eldest has adhd but because the hyperfixation is education I had a "fairly" easy ride the younger two are rough middle one wrecks the house and moans it's not tidy all three of them are hoarders it's a problem currently I'm unable to work

There are benefits there are fantastic days wonderful tiktok moments Facebook memories fabulous stuff there are days when you will feel far far away from your peers when you look at the school playground and think my kids couldn't be more different you will feel low the system is shocking depending on your area you may never get a "diagnosis" middle one might age out the system with zero help support and qualifications because education isn't set up for the likes of him youngest has ehcp and funding meets all the criteria for sen school on paper but gets rejected because they want more funding and are fighting for it so basically he is caught in a pissing contest he will lose this fight but as long as they win who cares (excuse my rant)

Your parenting journey has the potential to be harder and more isolating than others I suggest you find good friends in similar circumstances and hang on to them you will need each other and you always need someone to recognise small wins with you ds slept in his own bed all night it's in my room but he slept alone all night only one of my friends gets how much of a big deal this is! Good luck

There is no proven link between TV time and ASD. Yes TV time can lead to some developmental delays as children are spending less time practising skills and speech etc please don't feel guilty should it turn out they have ASD

What Are the flags the minder has noticed? First step would be to ask for a referral for assessment but keep in mind this can take some time. Early intervention is key to help children gain skills and supports

ASD is recognised and diagnosed a lot more these days so I would see about reaching out to some parent groups for advice and supports in the local area, check out FB etc and ask your HV.

This may feel scary as it's unknown but ASD just means their brains see the world differently and we as parents need to adapt how we interact and play with them

@Kadyrose thank you. He's very bright, has a great memory and he is quite sociable with family, very loving. She's picking up on his difficulties with noise, sensory issues, fixation with certain things (perfectly lining up specific toys and if anyone touches them it's a complete meltdown). Change and deviation from routine=meltdown. His grandmother on fathers side had offered to pay for a private assessment and me and my partner will have enough to pay if we need more private help, so in that way I'm very fortunate.

Again, thanks for all the responses! People can be so kind on here

What a fab childminder you have too.