Feeling anxious - DS in autism pathway

[GloGirl]

DS is having a difficult time at school and we've been advised to peruse a diagnosis for ASD/ADHD.

It's making me horribly stressed. I am on the verge of crying multiple times a day. The school runs are a nightmare. If we're having a good time at home I'm feeling guilty wishing all his life was this fun and carefree. If he's having a tough time I'm also feeling sorry for him (and me ) .

I'm debating a trip to the doctors (for me) although I'm aware this is situational - but I'm not coping well. We've booked a holiday in the short term which im looking forward to.

I'm already of the 'nervous' type. Does anyone have any recommendations or resources for parents during this process?

Thank you for your post @shufflestep. My DS is only 4 but I do worry about him (and am trying to learn more patience!). Good to hear that a diagnosis and learning about a condition can make life easier

@GloGirl

I did a few courses originally, and I'm about to start a local council one which is 3 full days. It's done by age groups.

Because the goal posts change, as they grow and develop what works today won't tomorrow!

You learn to pick your battles. DS has taken a different fluffy toy to school each day....I wasn't going to enforce no toys in school rule when it clearly helped if I hugged and kissed it at the school door, so he could get cuddles from it when he needed it!

I'd love to do a course @WishThisWasLangClegGin but I only get a couple of hours child-free most days... hopefully when the DC start school properly I'll be able to go on one. In the meantime I'm looking for some local support groups too for some more wisdom!

I completely agree with 'pick your battles', I don't see the harm in some of the things DTS1 wants to do or your DS wanting to take a toy to school. DTS1 is a bit of a TV addict though so I'm stricter with that, he's much nicer if he gets a bit of fresh air too!

Our eldest (he’s almost 6) has ASD.

I didn’t cope with the early stages of seeking diagnosis. I was caught in a cycle of doubt, self-pity, anger, denial, bargaining.

His diagnosis actually provided a resolution to much of this. I’ve never felt more positive about him than I do right now.

Autism is fine. It’s a variation but not an inferiority. And life goes on.

DS1 had always been a bit quirky, clearly intellectually sharp, but struggled with "basic" things and had a foul temper. The toddler years (10m to 5y) were just a string of one (often inecplicable) tantrum after another. He calmed down a bit at 6, then the second half of y2 until he settled into y3, he was in a stinking volatile mood. His personal best was a 4 hour meltdown because I asked him 4 times if he'd changed his reading book.

That was the time when I realised that things weren't quite "normal" and it was time to go to the GP. I went armed with a mind map of everything I felt was relevant from infancy and 14m later he was diagnosed with high functioning autism to add to the dyslexia and dyspraxis identified a few months earlier.

It's changed everything and nothing. From mentally accepting that something was different and adjusting my expectations, that made things easier before the actual confirmation. He is exactly who he has always been. I've done my best with what I knew at the time. Knowing earlier would have been easier He tends to mask through school and is no issue there, but he now has a diagnosis on his side if his coping mechanisms are exceeded.

He is happier for knowing why he's a bit different to average. Knowing doesn't solve or excuse anything, but it does help knowing his motivations better. When we came home from the diagnosis, I likened it to when I switch from driving my car on autopilot and have to adjust to the differences with DH's car and have to manually think about things that normally happen sub-conciously.

It was odd getting the confirmation. A relief, and something else that I can't quite identify. But not knowing and blundering on was harder.

It is really stressful op. DS had an ADOS last year and I stopped sleeping at all in the run-up. It was inconclusive so we’re still in a wait and see phase at the moment - he’s younger than your DS and everyone seems to agree he’s borderline and label won’t necessarily be the best thing for him at this time.

Try to get some time for yourself if at all possible. I started running and it has saves my sanity, honestly. It’s time for me and gives me a sense of achievement and purpose beyond DS. I also joined a running Facebook group so I feel a sense of belonging there too.

Look after yourself as well as your lovely DS And good luck.

@PaddyF0dder and @LuckyLickitung my DS could be described as 'quirky' as well - he's so quick to have a meltdown and still isn't great at social interaction. Think it's part of the reason I feel lonely a lot of the time, his behaviour has isolated me from a lot of things I could have taken part in (playgroups, play dates etc); he just doesn't cope well with them and I had to watch him constantly. Haven't had any complaints from school but then he does tend to come out and have an absolute temper tantrum at the smallest thing, so is obviously holding it all in

@Spudlet I had all good intentions to start running this year with the C25K... miserable weather + my ear infection has meant it's been a non starter so far, but hopefully soon!

Sorry to ask for more input but it's been a really tough day with DTS1 I left the DTs with DP whilst I was doing a bit of shopping, he was watching them play on a slide in town. I was gone for about an hour, rang frequently to ask if everything was ok, was told it was fine. Got back and he had a barrage of complaints about DTS1 being horrid to other children... no idea why he hadn't just removed him?! Very annoying as DTS1 was clearly going into overexcited mode, bright red, desperately in need of a drink, a snack and calm down time. I'm not trying to excuse his behaviour - obviously it's not acceptable to make other DC unhappy - but FFS, just take him away!!

Later DP said he'd take the DC to PIL for an hour or so whilst I got on with the housework - came back 4 hours later with DTS1 in meltdown mode - far, far too tired, hungry, and sobbing that people had put food in his mouth that he didn't like. Apparently his (adult) cousin thought it was a game?! I'm really cross, he's a fussy eater anyway and this will send him straight back to his 'safe zone' of beige food

Ohhhh that was a big rant; apologies, just had to let it out somewhere! And I don't know where to turn - DTS1 is only 4, I know he's little still but I don't want it to get worse...

My daughter was diagnosed at 8. We thought she had ADHD due to poor concentration, fidgeting, wandering around the class room when she felt like it, poor sleeping, bouncing off the walls generally. She got an ASD diagnosis and it was a relief (that it was real and not just shit parenting) and terribly sad at the same time. We had to mourn the child she would never be. At the same time running the daily battle of the playground and teachers ‘wanting a word’. I ended up at the GP’s in tears and was prescribed ADs for anxiety.

I did a lot of information gathering and found groups etc. My daughter presents a bit unusually so I never felt I fitted in, plus it felt a bit competitive misery at times. I cope by having a hobby where I can be myself instead of autism mum.

She is 12 now and owns her diagnosis. Things have settled down a lot though not perfect. She is amazing.

Just to add I am also a nervous type. I wonder if I also have ASD as I can appear socially capable but it’s all an act. Never fitted in at school. I have toughened up enormously to get my daughter’s educational needs met. It’s amazing how strong you can be when your child is relying on you.

Oh sunshine, vent away.

Sounds like he was over stimulated.

One of my twins when there's been too much going on, acts like they are going crazy, hyperactive and can't listen to simple instructions. Contrary to popular belief, not all ASD kids shut down and withdraw when overwhelmed. She turns into a Tasmania Devil!

I've learnt to spot when she needs to be removed, as once she 'goes over the edge' as we call it, it can take hours to calm her fully down.

Some times it's like the coke bottle analogy. Lots of small things, or shakes to the bottle, then boom! The lid comes off and there's no going back.

She has learnt to self regulate a little bit, she's 6 nearly 7. In the middle of small family party she vanished ...She was upstairs running a bubble bath

Distraction can be useful. I have a sensory bag I keep for this. It has fidget toys, a kaleidoscope, putty and other small toys in it. It's only used sparingly, so the kids think it's a real treat when I bring it out.

Try and get DP to come on any introductory courses that you go on.

It really helped DH to come on a sensory processing course. A light bulb went on when he finally understood how difficult it was for our twins to filter out background noise, temperatures, lights, textures and other distractions. That they didn't choose to be difficult. They just couldn't cope. He finally realised that we are the ones who need to adjust and protect them. By trying to get them to conform by punishing them was counter productive.

DefConOne I wonder the same about myself. I really struggle with things like office politics and I struggled socially at school too - it’s like I can’t read those currents easily.

Rant away Ruby - that sounds like a real shit of a day. I’d second getting your DP to attend as many courses and even diagnostic appointments as he can. Dh comes along whenever possible and I think it really helps to have both parents on the same page.

Our 5.5yo has just received a surprise diagnosis (well actually a second opinion as the first was such a shock that we wanted to be sure). The letter arrived yesterday and I’m actually finding it a bit of a traumatic read. It’s so stark, the information about his quirks and traits. I hate the way it’s written and I hate that one day he might read it.

That aside, this thread is interesting to me. We had a dreadful year R in school with the teacher on my case all the time about behaviour and appropriateness. But this year he’s been a dream in school.

The diagnosis (Aspergers) makes so much sense on one level and yet on an entirely different level I can’t see a difference from his peers. But we live in a slightly posh middle class area full of high achieving nerdy types, so maybe more of his friends are more like him. Idk.

For now we have decided not to tell him (or anyone else beyond school). The small handful of people we have told are as disbelieving as I am, and yet in my heart, I know that he is different to my other child. The paed who diagnosed did seem to think that it will worsen with time, and that the diagnosis was future proofing for us, and reading the above perhaps this good year is down to him being well stimulated in school and an excellent class teacher. Because last year was bloody awful

My DD is autistic and I'm 99% sure she's about to be diagnosed with ADHD too.

The one thing that really helped us was finding a local support group. They offer courses on parenting children with additional needs. It also meant that I had people in RL I could talk to who "get" it, share ideas and stuff. Plus they sometimes do things for the kids which can be a nice way of making friends if they struggle socially.

Check out your area's local offer page to find out what is available near you.

Definitely real life support.

There's a small group of us who have children in the same school, we have the odd coffee and a Whatsapp group and it's been a real sanity saver. No judgements and a safe place to vent.

@Waitingforplastertodry it's harsh seeing it all in black and white. Stuff you know and things you dismiss as immaturity, quirks etc They have to be brutal and document it all.

My first twin I cried and cried, even though it was pretty clear that she was different, from the age of 2. Previously she would have been diagnosed as Aspergers. She is intelligent but needs a full time 1 to 1 in school.

Her twin brother I was more in denial about. He's quirky, young for his age but needs routine and doesn't deal with change very well, and is very literal. That was really hard. I kept thinking that he just needs more time to catch up, and he wouldnt meet the diagnostic criteria. I was shocked as it really magnified all the "quirks" into a bleak picture.

My Eldest Dd, who is 2 years older has coordination issues, very emotional, very literal and needs constant supervision to complete simple tasks, and we suspected dyspraxia. Getting a diagnosis in our local area is almost impossible for dyspraxia. I was stunned when the school Senco( who in I have the utmost respect and trust and has supported the twins so well) has refered her to the ASD pathway.

She thinks that possibly by putting stuff in place for the others, visual and audible timetables, using now and next, routines etc it has masked a lot of things at home.

Is bloody hard!

You and DP/DH both need to understand and get on board.

it's harsh seeing it all in black and white. Stuff you know and things you dismiss as immaturity, quirks etc They have to be brutal and document it all.

Absolutely this. When DS got his formal speech therapy assessment I wept buckets. It was horrible seeing my little boy dissected like that, even though I knew it had to be that way to get him any support.

When I was worrying about him being labelled, a wise friend told me this: ‘Labels are scary - however you can then fashion them from wood and metal and beat people around the head with them to get some help...’

It made me laugh, and it’s a fair point too!

@Spudlet Labels are scary it's true. Your child doesn't change. They dont sprout a neon sign. They are still the little girl or boy you love and want to protect, with their own personality.

I have found knowing that there's a reason for some of the challenging behaviour has made me more tolerant. I can see that somethings are not a choice from my childrens point of view.

That is not to say that they aren't ever naughty! Therein lies the rub! You do learn the difference between a tantrum and meltdown. You know when they have done something they knew they shouldn't. I still need to parent on all the usual stuff, just change my approach....I admit I have to take a step back occasionally and think where the behaviour is coming from. It's easy when your tired and frustrated to not think properly.

@Wish I think I’m where you were with your boy twin. Sometimes I just think he’s a bit peculiar and hard work. And other days I can see so clearly why the dr thinks what she does. But then other people don’t see it and I feel like a fraud. I feel so confused and yet simultaneously I have absolute clarity. Hard to explain

Hi. Reports are always grim. It is very upsetting reading them and they don't somehow link with your own child. But labels give power and you don't have to tell the world. I advise on being selective to protect yourselves. I use the term neurodiversity as it makes it more medical, more neurologically based, and less about 'if you were just stricter/less strict/interractive/less interractive they would be fine' type comments. The neurodiverse movement is about challenging disability as a deficit and about acknowledging difference - just as the diversity movement has done.

Just as a bit of hope, my son has many neurodiverse conditions including autism, dyspraxia and dyslexia. He has a job, drives his car, shops, is funny, has some friends, and has just got back from a holiday. He loves photography, rambling and eating out. I am a very proud mum. It's not easy but things are getting better out there. Remember, the 2010 Equality Act is your best friend.

@Flyingarcher yes that’s exactly it - I know that what is said in the report is true, but somehow they’ve managed to reduce him to some text, and just his less desirable qualities. But he is a complex child and probably doesn’t need help. Just that he functions so well some of the time and then doesn’t at others. Just had a massive meltdown because I said he needed to go in the shower. Lots of screaming, shouting and carrying on.

I work in the engineering department of a research intensive university so I know quite a few people who would perhaps qualify as neurodiverse. So I know he will likely be fine. It makes so much about him make sense but I guess I’m feeling a little bit like ‘why him?’ at the moment too.

Thank you for the lovely words of support @Flyingarcher. I really worry about DTS1 getting older - he desperately wants to make friends, go to parties etc - but too much stimulation definitely sends him over the edge

He does sound like your DD in that respect @WishThisWasLangClegGin, for example sometimes in the evening he just cannot calm himself down enough to go to sleep. He's got a bit better with that because I was so strict - he's even worse if he's tired in the mornings, it's straight into overexcited/ hyperactive mode and then later he crashes. He still seems quite young for his age - would be happy for me to carry him everywhere! - and I don't see as much progression with him, whereas DTS2 is more straightforward.

I'd love DP to come to courses etc with me but he's self employed so it's tricky, if he's not working then he's not earning money! Plus he's often working on sites quite a way away, taking an hour or two out wouldn't be possible, but maybe we can do it in the future.

Thank you for everyone's encouraging words too it's been a better day today, the DTs were out on bikes/ scooters for a good few hours. DTS1 had a few moans but no meltdown at all. Result!!

Really challenging day today, DTS1 has moaned/ played up/ jumped around like a mad thing with no respite. He had school this morning, we went to activity club this afternoon (which he enjoys) but still, constant moaning. Wouldn't even try to do his homework, whinged about his dinner. Then DP came home late and wound the DTs up again just as I was getting them off to bed it took him a good hour to wind down enough to fall asleep, so will no doubt be an overtired nightmare tomorrow. Marvellous.

I'm just so dispirited with all of it, even DTS2 is now saying that he doesn't want to play with him, asking if he can go to school away from him, asking for more attention from me etc. I grew up with a disabled sibling and essentially got zero attention from DM & DF from the moment he was born - I didn't want that for my DC, but that's what seems to be happening

Oh and we have a school birthday party to attend at the weekend - I only said yes because it's in a local church hall and I thought I'd be able to watch DTS1 like a hawk and make sure he didn't play up, but am already stressed over it!