To feel bad for feeling sad about my son's most likely neurodiversity

[2023ismyyear]

Hi All

Just feeling really down today and wanting to reach out to all you lovely mumsnetters...

A common theme I see on here (and which I find so very helpful to read about), so would love to hear from other mums out there to hold my hand :-(

So in some ways I know and feel I'm so very lucky with my DS. He's just turned 4 - he's the light of my life :-) I know there is a lot of controversy in the use of "high functioning" but I suppose what I'm saying is that at home you'd not really notice my son is "different". He's incredibly chatty, expressive, is affectionate and hilarious, super clever and creative, connects so much with me and his family, the list goes on and on... But it's been flagged to me (and if I'm honest), it's becoming more and more obvious that he is likely autistic and/or ADHD, through feedback from nursery and now school. He still has very little interest in his peers, struggles in a noisy education setting to focus and starts becoming dis-regulated, struggles to transition between activities (especially if it's something he's enjoying), and seems to sort of lose his communication skills the more overwhelmed he gets.

He started school a few weeks ago, already on senco's radar, and despite my nerves the first week or so went really well, he loved it, the feedback was he was getting on really well... but the last few days (as the days have increased in length) it's started falling apart and both his class teacher and the senco were waiting at drop off to let me know some of the challenges of the last few days... He's getting quite aggravated and started pushing other children, started getting overwhelmed and doing things like biting on his clothing or licking things, lying on the carpet and not responding, just the whole display of autistic behaviours.. I wonder if it's the novelty of school wearing off, or he's managed so far but he can't keep it up.. They've now suggested a reduced time table and I've got a meeting with Senco next week to discuss next steps.

It's just the start of it all isn't it? I guess that's the sadness and the frustration. So many things that are just going to be that bit harder for us. The world is just not built for my wonderful DS.. It's so hard to not compare to other parents and other NT kids and feel pitied/lacking/isolated. I'm quite new to the area and had hoped to make some friends - I can already feel some of the tenuous links I'd made breaking off as my DS doesn't reciprocate play with the other mum's kids, it starts becoming obvious we're a bit different, we're not going to be going to playdates, etc. The thing is, my son doesn't care about that at all - he's completely happy hanging out with his family (me, his dad, his grandparents, aunties and uncles etc) and he connects so well with us adults. But selfishly I guess it also hurts to feel a bit isolated and different..

I'm in your position OP, or I was a year ago when DD started school nursery, unfortunately that school weren't supportive and I moved her to a different one for Reception. That aside I've found being honest with other parents helps, so when you're making small talk at the gates and they ask how your child is doing then be honest. He's struggling, they suspect he might have a communication delay, etc. People, on the whole, are much more sympathetic and understanding when they have a clear picture rather than seeing and hearing snapshots of "disruptive" behaviour.

Starting school is also a massive change for every child and it will take him time to adjust, but just because he is reacting like this in week 3/4 doesn't mean this will represent his whole school journey.

As for making friends, my dd's nursery teacher was obsessed with this, constantly saying she was playing alone and trying to organise her into group games rather than just accepting she was happy as she was. A year later she is much more social, but her Reception teacher at the new school says she seems quite happy drifting from child to child and that if she is happy that's what matters. I personally don't remember really forming a proper friendship group myself to year 2.

💐

I have an autistic DS in Y3 who couldn’t cope with mainstream and is now thriving in a fantastic independent specialist setting. It’s okay to feel sad that you don’t have the child you thought you’d have: it is a type of grieving process. It’s also okay to worry that life will be more difficult for your DS as a likely ND person.

It’s quite likely your DS was masking at school and is no longer able to keep it up. Personally I’d be reminding the school that a reduced timetable is unlawful and asking them what they are planning to do to meet DS needs and mitigate the overwhelm/dysregulation at school, but that’s probably me being combative after years of battling with the LA to get DS into the right school. In the nicest possible way, you might want to prepare for that to be your reality: it is common to all the SEN parents I know.

Your DS sounds lovely. I hate to come over all “Welcome to Holland” because I find SEN parenting almost overwhelming at times, and I have moments where I could quite cheerfully launch DS into orbit, but even if your boy is quirkier and has different interests to his peers, he’s not “lesser” and can have a lovely life. 💐

Autism is shit. It's not unreasonable to be sad nor grieve the life you hoped for him and with him.

Find the other SEN parents at school.

(Autistic parent of two autistic kids. )
Ps sometimes it's not so much welcome to Holland, more like welcome to (insert war zone/natural disaster zone of choice)

Not saying that he isn’t autistic but is he summer born? If so look at the research around the issues summer born boys face when they are not deferred, they are largely no where near ready for the school environment. My FB was getting similar feedback after his first term at pre school, my Christmas they said they weren’t sure, by summer they said no nothing going on other than being very young for the year. We’ve deferred and he’s just started at a new pre-school. He is loving it, so ready, so many friends and not struggling with routine or the long day etc, just an alternative perspective

YANBU. He's going to have a hard life. It is sad.

I'm very positive in general but my dd's high functioning autism got much worse (I was told it can't get worse, it just gets more obvious as they get older, but I beg to differ) when she was a teen, and I've had to give up work as a result as she couldn't cope with going back to school post COVID. She's developed very severe OCD and is only just about functioning. I used to one of those "autism is not a disability!" annoying people and now I would say my dd is disabled as a result. The really awful thing is that if your child is fairly quiet and well behaved the support is rubbish - as our paediatrician said, it's the children that make the most noise that get the most help, and they are often the ones who benefit the least.
Just take it day by day OP, and don't be afraid to have a little cry when you need it

Not unreasonable at all. The adjustment in expectations and the ongoing battles you will face right through the education system are massive. Not to mention the numerous meetings, hospital appts etc etc.

When the support's in place at the right level, it's great. All mine adult now. One ds with cognitive difficulties identified early on and supported right through education and now supported employment.

All others able cognitively but 2 has serious MH difficulties at high school.

Other 2 got through high school no problems but have had to adjust employment to suit ( one dd talented artist, lives alone and self supporting with art)
Ds computer geek, very able, first class degree. Will be fine but has had some relationship diffs and resulting depression.

Very reasonable to be sad! But loads of positives too🙂

YANBU. My DS is autistic/ADHD and it is hard. I worry that my child has labels, that other parents gossip about how he's 'naughty' when actually he gets dysregulated. But he's found his crew now, mainly only with other ND children, and copes much better now than he has in the past (mainstream state school). I worry about secondary school for him!

I agree, Autism is is a hard, lonely confusing life.

I am diagnosed, plus adult child diagnosed.

i worked my butt off getting my adult child to the place where he is now, and my own life and identity (whoever i actually am) has been flushed in the process.

Just learn as much as you can from Adult ASD people especially those in the 18-30 range.

good luck.

There are plenty of autistic adults who have fantastic and fulfilling lives, the understanding and recognition now is going to make is easier for future generations.

You're not being unreasonable. That feeling when it all starts being a lot more apparent is dreadful feeling
My DS is only 2 and a half but has been flagged up with a Social Communication Disorder. He also seems OK when we're at home or in the right environment but wow even we're not. I feel like someone's pulled a lever and my train is slowly going down a different set of tracks and I dont want to. I've found everyone to be either in total denial or aggressively positive about it all. Big hugs and thank you for making me feel like I can say " I don't like it either!" Out loud without getting gaslit or shamed.

Also please don't despair just yet about school, September is so much more of a lunatic clusterfuck than people could possibly imagine, give it a few weeks for the class dynamic to settle and the routine to become more apparent and hopefully your son will begin to cope a bit better.
Find out what times of day are his trigger or when he lashes out, it's often lunchtimes and the following afternoon sessions. Could also be assembly time building up coiled energy. He might need timers for tidy up time or a carpet square to sit on at carpet time etc.

That should read ' wow when we're not'

I’d say it’s really good he’s already on the school’s radar:

My DD wasn’t diagnosed til she messed up her exams - school was hard for her, friendships especially/ and her DD’s home
behaviour was “stroppy” or downright violent - if we’d know then what we know now she’d not have had to deal with so much overwhelm and her teenage years would not have included nearly catastrophic crisis.

however, she’s now 23, graduated in her specialist interest, working, has a lovely boyfriend and a fantastic small but important friendship group of people who are also largely ND. she has learned to manage her energy, her OCD and anxiety, and I’d honestly say she is happy and making the most of her natural hyperfocus.

My regret is not that she’s autistic but that I didn’t realise she’s autistic - an early diagnosis would have changed our lives for the better.

im telling you this because while I wouldn’t swap her autism I would swap the hardship she endured because her ND was unrecognised. Your wee boy will be spared that struggle, which won’t fix things for him but it will definitely prevent some issues, that’s a good thing.

Yes of course it’s reasonable to be sad that your life and his life are going to be harder as a result.

The one thing I would say is: don’t underestimate how many other kids have some kind of issue that you may not know about. SEN/SN but also health issues, hearing issues, family issues etc. It’s easy to look around and think everyone else is having an easy time, and some are, but quite a few aren’t.

I would also agree with being open (to an extent) with other parents. Some will be a lot more understanding as a result and if some turn away as a result- you’re best off without them.

I haven't found parents of DS peers have been at all understanding or helpful when I told them about his ADHD but it helped a bit with DD friends' parents.

Thank you all so much for your lovely, kind words. Especially resonate so much with @OhMaria2's amazing description of slowly but surely pulling away on the wrong tracks. That just resonates with me SO much. I wonder if it's better or worse knowing clearly very early on that something is very much not quite "right"? I (and everyone else) had zero concerns at all under DS was well over 2 - he actually seemed incredibly ahead for a long time! (although I now see that as traits of his autism - ie, being able to count to 100 at 18 months). He walked early, talked early, had literally hundreds of words between 1 and 2, engaged SO much with the adults in his life.. it was only when his social skills and social communication skills just started falling further and further behind his peers, and he wasn't really growing out of hand flapping, that I started wondering.. so yes it's been like a very slow, painful change of tracks with me looking back at the track I thought we were on and wanting to get back on to that!
We used to have loads of playdates when DS was a baby into his toddlerhood, but once his little baby friends started wanting so much more than he could give, those playdates sort of faded away.. Again, when they did happen or do happen, it's not really much fun for anyone involved..
It's so so wonderfully cathartic to hear your amazing stories about your amazing children and know we're not quite alone in all this.. x

The play dates fading away because they all go down like the Hindenberg is miserable isn't it? Big hugs!

My son was diagnosed at 5 years. We knew he was different and I thought if I just knew what was wrong it would be fixed and all would be alright. This was 30 years ago when there was very little knowledge or info ( and no internet) about autism and I found it very difficult to comprehend and compute. I went to the docs as I felt depressed and she explained that I was grieving for the child I thought I had and suddenly had a child with a different future, just as loved and precious and needing me just as much. That thought did help me a lot to come to terms with it.

30 years later I still love my son to bits. There have been many battles arguments and yes, tantrums with various authorities - schools, colleges, DWP and employers. My son has completed an electrical apprenticeship, has a full time job and a car and is generally a happy chap. No girlfriend yet and maybe there never will be but 30 years ago this all seemed an impossibility. Good luck to you and your son on your journey

I wouldn't be too concerned. Your DS will find his place. I'm not neurotypical. Neither are my DH or our DCs. We're mostly high earners with interesting, successful careers, albeit somewhat inept at superficial social stuff.

When you have a child, you inevitably think about that child growing and developing and becoming whatever they want, with opportunities and a fantastic life. Everyone wants the very best for their children and when you realise, or are told, that your child has differences, you’re bound to feel a sense of regret for the life and expectations you had.

OP, look at all the positives you’ve said your son is- funny, creative, affectionate, clever. School is a new experience for him and he could well be overwhelmed by the pace and different expectations. It’s good that the staff at school have recognised that he needs support and have communicated with you. When you have the meeting, ask what their plan for support is. He’s entitled to full time education and any plan for part time must be very precise and with a clear plan for reintroducing full time again. Ask if there are trigger points and if there are, what can be done to ameliorate those times.

Communication and cooperation between you and the school is key to him having a good experience. A request for an EHCNA is reasonable because, although he’s been in school a short time, it’s clear that he has some needs which need support.

It must feel isolating and people can be judgmental, but he’s your boy and you love him.