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

I posted this yesterday in parenting but got no responses. So I’m reposting here now. So when I saw today, I mean yesterday.

It’s great that you have an assessment, have you a date yet or are you waiting to hear?

It’s common for dads to be in denial so give him time to get to the same place as you. The behaviours that you have described are definitely not typical at that age and I agree that autism is looking likely, though obviously I can’t diagnose either.

There is a YouTube channel called Nurturing Neurodiversity that you should find helpful. She has lots of positive videos about how she came to terms with her son’s diagnosis. She also has a Facebook group for people with children likely to be diagnosed with autism. Hopefully you will get real support there.

Google your local authority Local Offer page and see if there are any special needs play groups in your area. It’s great to meet parents that are in a similar position to yourself and a low stress environment to socialise in without having to worry about how different your child seems to their peers. Many soft play centres run a special needs session which is much quieter and low stress too.

Otherwise try to find some time to read about autism if you haven’t already. Good books to start with are Luke Beardon’s book on autism in children and How to raise a happy autistic child by Jesse Hewitson.

You don’t mention behavioural issues, does she have tantrums or meltdowns regularly? Does she have any sensory issues? This is a really good sensory resource:

www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

You can do this, so hang in there.

My ds had a lot of echolalia when he was younger but he outgrew it and his speech continues to come along in leaps and bounds. He also didn’t ask a question until he was 3 1/2 with why being the last to come. He’s just turned 6 and asks questions all the time now.

It’s tough isn’t it. My dd was born 13 months after her sibling and has asd and adhd. Managing the two was hard when they were young as they were like twins in many ways. My dd slept very very badly and I felt like I was sleepwalking most of the time. Groups were hard as dd was very difficult. She’s 10 now and has gotten easier. We had another baby when dd was 3 and he has asd and adhd but is much more complex and incredibly hard.

You’re doing a great job. I’d be honest with people about the asd referral though when mine were small I felt like a bit of a fraud when she wasn’t diagnosed but looking back I can see I should’ve just mentioned it.

Check where you live and their local offer. It’ll show you what’s on offer. You might find some local Sen playgroups.

Thank you all.

She does have tantrums yes but tbh I don’t think they’re anything unusual. My biggest issue is getting her to cope with her little sister. Dd1 takes her frustration out on dd2 who has got scratched several times. I find that hard to cope with and hard to deal with in terms of my response. It doesn’t help that dd2 can walk and wants to do whatever her sister is doing. More than tantrums she tends to want loads of reassurance. So I took her to an Xmas party at a toddler group we normally go to. Something freaked her out and she just clung to me for ages (but she’s needs me to be stood up and holding her). My mum had dd2 thankfully. This is the thing - I’m finding it impossible to do stuff with both of them as it’s like having two babies.

Bizarrely I find dd2 so much harder to deal with. She’s so loud and screechy and demanding. I know I sound awful but dd2 sleeps so badly as well and she’s only 13 months but so stroppy already. I couldn’t really cope with them before I was fairly certain about dd1 being autistic.

The echolocia is diminishing to be fair. It’s mainly delayed now / quoting from tv and books when she’s playing. So it sort of looks like imaginative play but she’s actually acting out tv shows or books.

Sensory stuff she’s ok with really apart from big busy noisy places. So soft play on a Saturday is a no go. Parties can be hit and miss.

It probably sounds stupid but a current big anxiety is how I handle existing mum friends / acquaintances. Dd has no interest in playing or even acknowledging other kids anyway so I think my carefully formed friendships will fall away anyway.

I’m so so low. I had been wondering if I have PND anyway. I have had cbt in the past but don’t know how that could help really.

I’m just so sick of being screamed at all day.

If you think you have PND then go and speak to you GP as soon as possible.

She has an initial appointment on 12th feb but I understand it’s just a quick 20 minute thing where they decide whether to proceed with an assessment. There is then a wait of around a year.

The thing is I feel if circumstances were different I wouldn’t feel depressed. I mean if I wasn’t sleep deprived and I had more help with the kids and if dd1 was NT so I had more of a social life.

But circumstances aren’t different and you are feeling depressed so my advice is to go.

You are in the thick of it right now, it’s tough for everyone with two young children but things will get better, this won’t last forever

Yes, that’s true. I’m frightened of anti depressants and of saying PND. Seems so serious and bad.

But this morning I couldn’t cope. Dd2 shrieked at breakfast so dd1 swiped her breakfast into the floor. And i’d given her toast and weetabix as she won’t even look at me when I ask her what she wants.

I’m sorry everyone. I’m really struggling to accept dd1 is probably autistic. I’m a primary school teacher so not unfamiliar with autism. Not sure if that helps or makes it worse.

I’m so worried for dd1s future.

We were told DD (now 5.5) was probably autistic when DS (now nearly 3) was just born (I think he was 10 days old or something). I was just in shock and really my whole maternity leave now I look back on it was a bit of a blur - DS was a much less good sleeper than DD so I was sleep deprived and shocked and worried and just overcome really.

Nurturing Neurodiversity also has a video with her husband which your DH might find useful, where he talks about his reactions to finding out their son is autistic. There is also a channel called Coming Home to Autism which has a very overdramatic titled video (autism definitely did not end their relationship!) but actually it's mainly the husband talking about how he struggled to come to terms with it and then realised he was being an idiot (and she realised she needed to let him in more), so might be worth a watch too! Both of those families have boys who were/are nonverbal so slightly different situations but I think a lot of the emotions you go through are very similar.

Later it might also be worth checking out some autistic women on YouTube to get an adult perspective. I particularly like Purple Ella and Yo Samdy Sam (both also Mums so they get parenting too! Two of Ella's children are also autistic. Sam's child is still a toddler I think, and no mention of their neurology that I've seen!)

I also second all of open's recommendations above. There is also an SLT channel on YouTube called Chirp that has some quite useful stuff on engagement and sensory needs. It's funny when we were first told about DD I thought she had no sensory needs but as I've learned more I've realised she actually has quite a lot of sensory differences (some of them I didn't spot because they were the same as mine: like you I actually find my neurotypical DS harder to parent in some ways than DD - I find it hard to figure out his drama sometimes! Though getting easier now he is a bit more grown up).

It sounds like your DD has a lot of good skills already. My DD also wasn't very interested in social things when she was your DD's age, but over time she has become much more social (still less than her peers, but enough that things like school and parties and play dates work OK).

The key things we've tried to teach her as she got older are just skills so she can express her needs (so if she's not enjoying playing with another kid, we're trying to teach her ways to change to a game they can both enjoy, rather than just wandering off which would be her natural response, and if she's at a party and it's too much and she takes herself into another room or under the table we praise her for taking a break as we find out that works much better and I think it's a good life skill for her to recognise when she's overwhelmed and give herself a break).

The sibling thing is hard. Younger siblings are annoying for any child (especially when they're too young to really be fun or follow instructions: DD and DS get on much better now DS is old enough to play the games that DD comes up with!). I think that's particularly true for our ND kids who tend to be a bit anxious and to need to control their environment and have lots of down time to deal with that. Does DD2 take naps? If so maybe you can use that time to connect more with DD1 (and/or to give her some "me time" when she can play her own way, listen to an audio book or some music, or do things that are tricky when DD2 is around?) Otherwise we tried to just have some protected spaces for DD - so e.g. she would do some arts and crafts high up where DS couldn't reach. We always praised her being a good sister and tried to give her big sister jobs that she would enjoy, and that we could praise her for, so she got a mental impression of herself as a good big sister. We also tried to make things quite explicitly equal for DS: so although sometimes we have to say "well DS can do that because he's younger, and you were also allowed to do that when you were his age", sometimes I would also tell DS off for things that were a bit ridiculous because I wanted to make a point of things being fair. DD is very big on fairness and logic, so I knew if DS seemed to be "getting away with things" she woudl resent it!

She is a really good big sister now so she's kind of grown into the role as she's got bigger and DS has got more interesting!

In terms of telling people I told pretty much everyone when DD was going through the Dx process. I didn't really decide to, I was just so anxious and processing so much and couldn't help myself. I'm not particularly proud of it but I don't think it did any harm, and actually it was amazing how many people had a niece or nephew on the spectrum or knew something about it some other way, so I actually picked up some good knowledge and contacts that way. Maybe I was just lucky but nobody had a bad reaction at all or cut us out. I think actually maybe they cut DD a bit more slack because they knew to expect her to do things differently and that she wasn't being naughty or rude when she did that.

Definitely check out the Nurturing Neurodiversity Facebook group though. Nearly everybody who posts there is still going through the diagnosis process. It's mainly UK based so there's lots of practical knowledge building up there too (it's a new community, only been going a few months).

If your DD likes factual questions have you tried the books "You Choose", "Just Imagine", "You Choose in Space", etc? We used those a lot to start to build conversation skills. I think DD was a bit older than your DD when we did it. To begin with we just asked her questions about the pages ("which pet would you like to have?") and then over time we started modelling that she could ask us the same question back (you feel like an idiot but literally just saying "Which pet would you have Mummy? Oh, I think I'd like the lion with purple stripes"). And then over time you can prompt less (e.g. just say "Which...." and leave a gap ... and then later just leave a gap). Obviously you need them to be ready to do it - but it's still a fun book just to ask questions about when they're not ready to have proper conversations yet.

Good luck, and do come back to ask any questions you think of!

Thanks so much everyone for taking the time to reply. I really appreciate it.

I was struggling anyway with the two kids and I think the autism likelihood partly explains why as dd1 is not as able or independent as some 3 yr olds. I’ve been blaming myself for so long - I didn’t talk to her enough, I should have put her in nursery, I baby her etc. Even if there is some truth in those, I think I can see why I’ve been struggling so much.

So I don’t know about PND. The news yesterday abd I think finally seeing dh take in seriously has hit me hard.

Dh and I both had shit childhoods and it means so much to me to give my girls a good start. I feel that’s been robbed from me now. I can recognise I’m catastophising but it’ll take me a little while to process.

Dd2 does nap but often by the time I’ve cleared up, prepped dinner etc I don’t get long with dd1 especially as dd2 has short naps atm. Time with dd1 On her own is bliss.

Your DDs definitely still can have a lovely childhood. I'll bet they are having one!! But it's a huge amount to take in, particularly given the amount of misinformation about what autism is.

Do you think DD1 would get involved in some bits of clearing up or dinner prep? I know she's probably at an age where her "help" makes things take longer! But it might be a bit of a compromise? Hopefully DD2 might take longer naps in time too (I know DS has!)

It might actually be reassuring to start with some videos by autistic adults, so you can see what fab and amazing women our little girls can grow up into. For example:

• Invisible i talking about her diagnosis:
• Purple Ella talking with her friend Ros (also autistic, currently studying) about diagnosing women and girls:
• Yo Samdy Sam talking about her diagnosis (including that she was told she was a "clear cut case" despite being 33 by the time she was diagnosed):
• Lizzie Huxley Jones (Little Hux/Sew Many Books) on her diagnosis and some stuff about what she was like as a child:

Obviously all these women were diagnosed as adults as girls basically weren't diagnosed autistic until 10/15 years ago unless very clear cut cases - but I think their experiences are still kind of reassuring because when you listen to them you can see how much difference a bit of understanding would have made to their lives. They are already pretty happy women with families and friends - but I think they could have been even happier (and some of them have had mental health challenges in the past, that in some cases prompted their diagnosis) if their families had had the knowledge that we will have about our girls.

Anyway, I don't know if you are ready yet or if it will help you but when I was feeling really down it just amazed me to find these incredible autistic women and I got a lot of comfort from realising that autism doesn't set anything in stone for your child. Yes, it says they will have some challenges, but not that they can't be happy or have a "successful" life however you (or, more to the point I guess, they) choose to define that xx

Any advice...

Dd1 keeps trying to hurt dd2 whenever she’s frustrated which has been many times in the last hour. Dd2 keeps getting in the way and then shrieking very loudly.

I’ve put on music for dd1 and put dd2 in the cot for a few minutes. I was feeling ok first thing but now my nerves are shot again and I’m in tears. I was so proud of myself for getting myself back on an even keel but I’m now crying and I’ve shouted at dd1.

Dd2 is 13 months old but she is making coping with dd1 so much fucking harder.

Do you have time to read them a story or something calm like that?
TV, or does that wind them up more?
Can you take them out for a run around somewhere? Might help DD2 nap later too.
Bubbles in the sink and pouring/cups (if there's space for them to do it together - would probably need supervision if they're feeling scrappy!)

Can you teach DD1 to walk away instead (or to come to you for help/intervention) or will DD2 not let her? Giving them a bit of their own space sounds good but I guess they both want to be with you/near you, so easier said than done at this age?

Just wanted to drop you a reply as you sound like me a few years ago. DS1 was diagnosed with ASD age 4 (started process age 3) and I also had DS2 who was 2 years younger than him, who was an awful sleeper. I found the time with them both at home as pre-schoolers tough, just like you.

I am in a completely different place now. The sleep thing is certainly a killer so I really hope that improves for you. It just adds to the anxiety. Hypnotherapy REALLY helped me cope at the time.

Gradually we got to grips with what DS1 needs from us (and still learning!) which means that he is able to cope in general much better and improves life for all of us. DS2 finally sleeping. And now they are both at school.

I really feel for you as it was such a tough time for me, but the number one thing you can do to help all of you is going to be to get yourself sorted, in the best way that you think will work for you.

And please remember that it will get better

Thanks @LightTripper TV definitely works but I feel guilty using it. I have to put it on when I put dd down for a nap and whenever i leave them unsupervised (like making lunch) as dd1 is bewitched by telly! But dd1 scripts / echoes a lot from tv so that’s why I feel bad using it The music worked this morning luckily but I do need to help dd1 learn how to manage emotions. She got bitten (not badly but left a mark) today at preschool as apparently another child got in her space and she pushed them away near their mouth and the other kid bit down.

@Foxesjumpers thanks so much. You’re completely right. It’s the horrendous sleep deprivation plus the two kids anyway that are making this even harder to cope with. Totally get what you’re saying about looking after myself - I went for a (short!) run yesterday and dh and I did some yoga abs progressive muscle relaxation last night which helped. I’m going to self refer back to talking therapy as I can sense I’m not coping so well. Thank you.

Do any of you lovely people have any advice on potty training? I can’t have a conversation really with dd1. So she won’t answer a question. Her understanding is good though. Should I leave it for a long time?!

We used the Oh crap potty training method when ds was 3.7 and it worked well for us. I think understanding is the key thing. In the book there’s a list of what she believes determines they are ready. Each phase took longer than the book said but we got there reasonably quickly with wees. It was about three months until he asked to do a poo on the potty - during his first SALT appointment.

We did potty training at 2.5 with DD as her nursery wanted them trained and it was a nightmare... Ended up with encopresis and took a long time to resolve. I'd definitely leave it until you start to see some signs she's ready!! Maybe get a potty though so she can start to see it and give signs if she is curious?

Nurturing Neurodiversity just posted this on her Instagram and I thought it might give you a boost. Her boys are 4 and 2, so we're 3 and 1 last year, just like your two. It's followed by videos of her two now having a brilliant time playing together. It will get easier!

Just popping on to say I felt bad for using the TV when DD (4.5) was younger but then I discovered I could make you tube work on it and put aquarium screen saver on loop... it was repetitive enough for there to be less of a pull for DD to turn into a zombie and the v.gentle music didn’t bug me at all! It created a calm atmosphere I thought. Now she’s older we have a half an hour a day rule on the telly...3 Sarah and Ducks or one of the Julia Donaldson movies... it has helped to give me a break when I really need to get on with something (going to the loo on my own! Bliss!) but also sets an expectation for DD to de-zombie and re-engage with the world! Don’t know if this will help, or was just a thought....

Hi. We are in a very similar situation (I'm a teacher but sahm for now, 3 year old DS and a 1 year old who doesn't sleep much!)
I think I'm a bit further down the waiting for possible diagnosis for DS as we've been waiting 6 months already.
I've got lots of tips from reading threads like this and some of the books and videos. Although I have little time to actually read things and put them in place which is frustrating.
I also felt overwhelmed and lonely when referrals started happening, I couldn't be in denial anymore, and of course it all coincided with the hormonal newborn stage with a new baby. But it has got so much easier now I've got my head around things, and totally accepting my DS (eg understanding his stimming, finding activities he likes we can enjoy together) has really helped. I have spoken to a few mum friends and found most are so helpful to talk to, and then I feel so much more relaxed around them as there's no longer an elephant in the room. And we've recently had a real leap in understanding and expressing feelings.
Potty training went well for us at 3, my son could understand what we were explaining to him at that stage, after a week (!) of everything going on the floor it clicked. Did use YouTube a lot to get him happy sitting on it. It was very hard work though with a baby too
One of my NY resolutions was to try to spend 10 mins uninterrupted with each of them 1:1 a day (putting my phone away and following what they want to do) and I manage some days. Other resolution was to try to make time for myself, still a work in progress, but even just shutting myself in bedroom for half an hour at the weekend to read and have a coffee uninterrupted has made me feel a bit more relaxed.

Hi @yellowrainbow yes very similar situation and I’m a teacher too! Yes I totally get what you mean about the elephant in the room. I’d started avoiding certain situations because of this I now realise. Anyway I’m glad I’ve started telling people about the referral.

The thing I find hard is that it’s like having a 1 yr old and a 2 yr old rather than a 1 yr old and a 3 yr old. So I’ve been looking at mums I know with 2 kids thinking why can’t I do that? Now I realise why I find it so clinch harder. Dd1 is delayed in gross motor skills and communication and it makes things like her walking by the buggy, or coping in soft play so hard.

I’ve started reading the book “how to raise a happy autistic child” (thanks to pps who mentioned it) and it has helped me so much already.

Anyway thanks again. I’m starting to cope with this all a bit better!

That’s great OP. Pop back here whenever you need to; I’ve found great support and ideas from other MNs.

F