ASD referral - please help me cope

[Allthenumbers]

Looking for help, support, a hand hold from parents who know what I’m going through.

DD is 3. I’ve had concerns about her for about 8 months due to not responding to her name, slow to put 2 words together, avoiding eye contact, echolocia, and her lack of interest in her peers. She doesn’t respond to questions at all really. Unless factual eg what colour is it. She never really asks questions other than “where”, “where’s mummy gone”

She talks but often not in context. She’s very happy, cuddly and loving. She entertains herself endlessly (I know, not necessarily a good thing). She can tell if I’m sad sometimes. She can count to well over one hundred. She knows several books by heart and will recite them.

I went to a SALT drop in over the summer and told the therapist my concerns. She was happy to refer dd for an assessment.

She started a preschool in September and I told them my concerns. Their inclusion person from the LA saw her today and was pleased I’d already got the referral as that was what she’d recommend. She obviously can’t give a diagnosis but said dd has traits of ASD.

Poor DH has been in denial and the news that another professional agreed with me has knocked him for six today.

I feel so low and exhausted. I had dd2 a year ago. Having a one year old and three year old is tough enough but dd2 is a bad sleeper. And now this. I’m a SAHM for now. I can barely cope.

It’s hard to have friends with other mums with kids dds age as the older she gets the more noticeable her different behaviour is. I have social anxiety anyway. And it’s hard to take both of them out anyway since dd1 won’t listen and it’s impossible to have a meaningful conversation with her.

I don’t know whether to tell people she’s been referred for an assessment or not. Did you?

I need help but I don’t know who can help me. I feel like I can’t cope with another day with the kids

Such a nice update!! It really is a rollercoaster, but there are so many good days if you learn to let there be!

You have received some great tips and information from previous posters! :)

I found the description of your concerns of DD1 very interesting - while most of them can be associated with autism, at the same time they can also be age appropriate; speech delays can be common at this age, echolalia peaks at 2.5-3 YRs old as is part of normal speech development, name response can be difficult to measure and if you over test they will ignore you, etc. Your concerns are certainly valid and they should be looked at further but as autism is primarily a social communication disorder (not a speech disorder) then delays tend to normally present there. So for example, pointing to share interests (like a plane in the sky)? was she doing this by 18M of age? or did she use to show/give you things/toys she found interesting when younger? or does she look at you when unsure or cautious (social referencing)? etc - these are all examples of social communication with autism really tends to impair.

Thanks @LightTripper feeling a bit worse today but it’s the sleep deprivation after a bad night mainly I think.

Thanks @AladdinMum In all honesty I don’t know about the pointing or whether she bought toys to me. I wish I’d known pointing was so important! They should tell you at NCT! I saw a friends 18 month old today who was pointing at everything and I certainly don’t remember dd1 doing that. She was such a placid baby. She would sit reading her books for ages - didn’t need me as a playmate at all. She will point to things in books now. And she says “an aeroplane” if she hears one. I have seen her point to a few things now, at 3, now I know to look for it.
She doesn’t really bring toys to me now - she just likes playing on her own.

It’s the scripting as well that worries me. She acts out whole scenes she’s seen on tv.

She can also count well - with meaning up to 10, maybe more and reciting definitely over 100. And she can recite word for word several books, many many books! I know you wouldn’t see those listed as diagnostic criteria but they’re beyond the realm of “normal” I think!

Then there is the anxiety in big, noisy places.

I guess I think there is too many things for it not to be autism.

And repetitive, rigid play I’m seeing more of.

A friend of mine was just telling me about conversations she’d had with her 3 year old. It broke me a little bit. I can’t wait to talk like that with my wonderful little girl.

I used to be so smug about my very easy toddler! 🤦‍♀️

I've always wondered why pointing isn't on that Red Book page of developmental milestones? We were constantly asked when DD began to point and I really had no clue - I'd written down the dates of "looking at hands" or whatever other stuff they had in there, all of which the paediatricians were totally uninterested in when we got to assessment!

DD was a very easy toddler too. But she is a wonderful girl and we do have wonderful conversations now she is older and can involve us in her interests and passions. You will too! Hang in there.

OP I’m in a similar spot to you- toddler DD just beginning the route to diagnosis.

I’ve recently been spiralling and finding my fears about the future really difficult to manage.

I reached out to 2 mums who I knew from years ago, who I still followed on social media. They’d been upfront about their dc having asd and both were in mainstream and weren’t just happy, but thriving.

I met up with one of the mums this morning, and honestly it was the best thing I could have done for my mental health. Just being able to talk to someone who 100% understood where I was at, but who had come out the other side and was happy to answer my questions. She was honest that sometimes things got tough, but it wasn’t all doom and gloom at all!!!

I asked her did she worry about the future for her son and she paused and said “Honestly, no. He’s going to be fine.” That meant everything to me.

I keep reminding myself now that we’re lucky we’ve noticed the differences with dd and we’re getting her help now. Girls so easily slip under the radar with asd that next thing you know she could be 8, struggling to mask things in school and manage her anxiety and things fall apart. This way, we can get her help before she starts school.

It’s the scripting as well that worries me. She acts out whole scenes she’s seen on tv...And she can recite word for word several books, many many books! I know you wouldn’t see those listed as diagnostic criteria but they’re beyond the realm of “normal” I think!

My ds did this. He always had his own language too but he did a lot of scripting which he grew out of. He also knew many of his books by heart, he would sit there and turn the pages saying the story and, no, I don’t think it’s typical at all. My friend’s youngest is 2.8 and he does not do this.

Ds also pointed if you asked him a question but he did not have joint attention in the full sense of looking between you and the object as a shared experience. He also often wouldn’t look if you pointed something out to him.

Op you will have good days and more difficult days. Life and our dc’s development is not always linear. Sometimes it is one step forward and two steps back but the overall trend is upwards.

Oh, and I used to be smug about the vegetables my one year old used to eat. Then he turned two and stopped eating almost everything. It’s been four years now...

Thanks @LightTripper It completely should be in the red book although I have to say that I might’ve not completely the other ones anyway!!

Hello and thank you @TerribleCustomerCervix That must’ve been so helpful and reassuring to talk to those mums. Thanks for sharing. I have fears for the future too but my DH pointed out we can’t know the future for dd2 (who I’m fairly confident is NT) either. We all have different challenges etc etc But yes I’m completely with you on this journey and it’s ups and downs. You’re right it is so good we’ve spotted this early.

Thanks @openupmyeagereyes Did you ever try to stop the scripting? I just let her get on with it at the moment!

OP- if you’re finding your worries are really getting on top of you and you’re catastrophising, speak to your GP.

I couldn’t see past the worry-fog and trying to get through each day was like wading through treacle. I was watching dd like a hawk for “signs” and it was really tainting our time together.

I went on anxiety medication two months ago and it’s been like a switch flicked. I can rationalise my worries now in a way that was impossible a few weeks ago.

I mentioned it to Other ASD Mum and she laughed and said her too, it seems to be a right of passage to be on them at some stage! The uncertainty and worries at this stage can really do a number on you. That’s totally natural.

There’s also talking therapies etc which you can get referred to through your GP so you can really hash out what you’re worried about and find strategies to work around any anxieties.

Definitely go and get support if you find there are too many bad days.

You may find this helpful on scripting (definitely in the "let us get on with it" camp!) Amythest has a whole series of these "Ask an Autistic" videos and the ones I've watched have been very good.

No, we didn’t try to stop it. I think it’s a good sign. Firstly, your child is verbal which is what many parents hope for. Secondly, I believe they are learning about language and interaction whilst doing it. Ds would often use learned phrases in context and as his own language grew, the echolalia diminished. He still does it a little now but it’s mostly excitement about and acting out scenes from something he’s enjoyed. He is a delightful little chatterbox.

It must have sounded odd to others at times though as they will not have been aware where certain phrases came from. I once read an observation in his nursery learning journey book where one of the workers had spoken to him in the sandpit and he’d replied ‘I can’t play with you, I’m cleaning up your mess’. They will likely have assumed that I had said that to him but I knew it was from a Kipper episode.

Also, echolalia serves a purpose for them. For some it can be comforting when they are overwhelmed or don’t know what to say or how to respond. Some parents notice that their child’s scripting increases during times of anxiety. For these reasons alone it should not be suppressed IMO. Relieving the anxiety should be the primary focus.

Thanks again everyone.

I have self referred to talking therapies as it is all a bit much. I really think if I could get dd2 to sleep better that would help hugely.

Several people are pressuring me to get more childcare. Dd1 is in a preschool for 3 hours a day 4 days a week. It’s only open 3 hours a day and it term time only. I don’t want to do anything else with her though as she is happy and I want to do right by her. Do you guys understand? Someone i saw yesterday suggested I get a child minder on top or change her nursery but this would be so stressful for her and she seems so vulnerable to me as she can’t tell me about her day.

Dd2 is only 13 months and so I’d rather keep her home with me. But at the same time it’s hard to manage them both.

It’ll get easier as dd1 makes more progress I think.

Thanks for the video link @LightTripper - really helpful.

What is dd2’s sleep like? Is she difficult to settle, waking in the night? Is she still bf?

We ended up using a sleep consultant recommended on MN when ds was around 14 months as his regular waking was just too much. It was great if you can afford it but really only a mix of pick up/put down and gradual retreat which you could do yourselves though it does need determination to work through it. Maybe we can help between us? After that we had a (mostly) blissful year where he slept about 10.5 hours a night and napped in his cot for 2 hours after lunch. Then about a year later we had to take the side off his cot (as he climbed out twice) and he started to drop his nap so everything went haywire again for a while.

My ds only attended nursery for 3 hours in the mornings from a couple of months after he turned 3. It was enough for me and I didn’t want anyone else looking after him. It’s a bit different for me though as I only have one child and I’m a sahm, having not returned to work since ds was born.

Yes that’s how I feel - I don’t want anyone else looking after her and her preschool is enough. I’m so sick of this pressure to put them in nurseries. I don’t know if others get this? I was convinced dd1s developmental differences were because I was a shit mum who hadn’t put her in nursery aged 1. I don’t hate nurseries of course it’s just I wish people would respect my choice. I’m so so glad now dd1 was at home for so long as I think she’d have struggled a lot in a large nursery.

Anyway - the sleep. So yes dd2 is still bf. But now she goes to sleep in the cot from awake but she then still wakes several times a night. I’m trying to resettle by shushing / patting back to sleep which sometimes works but sometimes it doesn’t and I feed her. So mixed messages for her. I had been seeing improvements with only 1 or 2 wakes but it’s fucked up again the last couple of nights. Happy for any advice as long as it doesn’t involve crying! If she cries now I sing to her and either cuddle or comfort in cot which she sometimes prefers.

Well, it doesn’t involve no crying, unfortunately. It absolutely didn’t involve controlled crying or leaving them alone to cry at any point but refusing to feed to sleep, for instance, did result in crying from frustration. Crying is a baby’s way of communicating after all.

I seem to remember the poster FateDestiny posted lots of advice in the sleep section so maybe try looking there.

Yes I think I need to try harder not to feed. She doesn’t cry if I hold her but basically seems asleep until I put her back in cot then cries so it all starts again. I don’t want her to cry but it also wakes up dd1 which is a nightmare.

The sleep consultant told us that how they initially fall asleep at bedtime is key. So putting her in the cot awake and having her fall asleep by herself means she will start to go back to sleep by herself if she wakes in the night.

I switched to doing a final feed downstairs before bath time. Put them in the cot, sit next to it and then do pick up (to soothe) and then put down in the cot again when calm and repeat until they fall asleep.

It’s definitely not easy because nobody wants their baby to cry but it’s so easy to get into bad habits and it can be really tough to then change them. You need to do what is right for you and your dd though, obviously.

I'm totally with you on the nursery thing. I've realised some people seem to think it's not offensive to say their child is better at xyz because they're in nursery, when it is so offensive and probably untrue. I also thought maybe my little one was struggling in some areas because he hadn't gone to nursery age one or I wasn't doing enough. But i now believe because I knew him so well and how he communicated etc it probably was better for him to be with his mum those couple of years than lost in a bigger group. He now does quite a few hours at nursery, his are fine with signing up for 5 mornings and only attending some, gives me flexibility. Might be an option at yours in case you need another morning some weeks?

I think I’ll do that after Easter @yellowrainbow when she gets her free hours. Are coping when you have the two children and it’s just you? Dh works some weekends and I find it hard. A lot harder to get out now dd2 is bigger but dd1 is not your average 3 yr old. She’s more like a 2 year old.

Hmm your question has got me really thinking 🤔 it was definitely just surviving to begin with, with DS having far too much screen time and a very limited diet. And I have had times where I've wondered if I'm depressed and questioning my relationship with DH and also with extended family. My age gap is a bit bigger than yours I think at 2.5 yrs but did feel like less. I've felt like there's been that extra layer of emotional challenge , for example I'd try to go to a playgroup and as well as juggling the stress of two I'd be noticing how different my DS was, how he showed no interest in his baby sister, and I'd be chatting to mums about their everyday worries and thinking to myself how I had so much more to worry about but yet couldn't face offloading on anyone. We also had a crazy and miserable period of DS being petrified of electrical items, he was so unhappy.
At the moment things seem to be getting easier . DS is going through a happy phase and is doing things i would never have imagined a few months ago, like holding my hand to walk through a car park and sometimes talking to and kissing his sister. He's at a level of understanding now where he gets the visual timetable I've made him and loves knowing what's happening each day. That said I have days where I'm so tired and foggy, and have lost confidence.

Great you have self-referred to talking therapy, whether or not you have depression it'll be brilliant to go through everything.

What are people's experiences with securing a ehcp before school? As a mainstream teacher most pupils I taught with autism didn't have one so I assumed they were very hard to get. Maybe it was just the area I was in though as I was speaking to a senco recently and she said most pupils in her school with autism do and to try and get one before reception.

yellow we got an EHCP agreed before ds started school with funding to cover full time 1:1 support. We were lucky though I feel ds’ needs were pretty clear and he already had SENIF funding for his last term of nursery.

Just wanted to back you on the nursery thing. People find it challenging because they are sending their children to nursery and they see,however obliquely, an implied challenge in not doing so.

I also feel my dd would have drowned in a big nursery. We had to leave her first because it was so unsuitable for autistic kids. It ripped her to shreds in a few hours a day over 1 and a half terms! Awful.

Autistic kids do sadly often have problems with sleep. I'd go with the kindest way. It's amazing if you can get them back to sleep by themselves but don't feel bad if you can't.