Dd5 just diagnosed with ASD. Need a bit of a handhold…

[FirstFallopians]

We knew it was coming- I self-referred to SLT on her 2nd birthday, so this has been a long, long time in the making. She has a severe speech delay, but isn’t non-verbal.

They confirmed ASD- they said her functioning was severely impaired due to her unwillingness to engage outside her own agenda, but the doctor and SLT both said could see there was more that she wasn’t showing, potential there to be “unlocked”. No Learning Difficulties.

The language used was a bit of a kick in the teeth to be honest. This is the girl who went into the kitchen last week and made herself a Nutella sandwich.

I knew it was coming but I’m fucking terrified of the future. Will she be happy when she grows up? Will she be able to have any type of job? Will she be able to have any kind of independence?

Any supportive comments would be well received… (also any personal stories would lovely right now)

they said her functioning was severely impaired due to her unwillingness to engage outside her own agenda

Ugh, were these the words they used? She's 5, she doesn't have an agenda, she's just probably not very sophisticated at masking yet. This sentence makes it sound like she's choosing her behaviour when it will be very much rooted in how she experiences the world.

I would look up some information by autistic people about their experiences. I would recommend The Autistic Advocate who does a lot of training, and when she's older she might like Neurobears which is a course for kids. We really enjoyed a book called A Different Kind of Normal too, written by a woman about her childhood (again, not yet for her but handy for you).

You’ve done the best thing for your DD. Now she’ll grow up with the knowledge of why she’s different and not spend years wondering and thinking there’s something wrong with her - there isn’t. We need people who think differently. The best thing you can do is find out as much as you can about autism but there’s no rush, you’ve only just got the diagnosis. Stay away from Google but look at the national autistic society website. There’s often details of local support groups on the report when you get it.
PPs are spot on. Mental health is the most important thing. Keep things calm, allow her space when she needs it and don’t force her to socialise when she has had enough. My DD describes being “peopled out”. She also knows to spend alone time before she does social things - she has her school prom tonight and she’s going to spend the day on self care - walking the dog with me, relaxing with her music. I wasn’t sure she would choose to go and didn’t put pressure on her either way.
My DD is lovely and I wouldn’t change a thing about her. She’s bright, funny, kind, empathic. It’s not always easy but there’s far more good times than bad and I’m so proud of her. She’s off to university in September and I’m confident she’ll be fine.

My 5 yo son was diagnosed in February this year and already his report is out of date. I think that's just accepted that the report is a snapshot in time and it's use is purely diagnostic so the child can access services.

I'm having the same struggles as you worrying about absolutely everything. It's exhausting and always there in the back of my mind. I'm trying to channel it into determination to learn everything I can about autism, sensory profiles, services and supports etc. I think I'm trying to just control what I can control and push the worries into the background until they naturally (hopefully!) diminish as we all become more comfortable with the diagnosis. A friend shared the mantra "don't borrow your worries from the future" and I'm desperately clinging to that to keep myself steady.

Remember that you know your girl, and she's already way ahead of so many of her autistic peers in that she's 5 and already has her diagnosis. She has you worrying for her, which means she has a strong support system looking out for her. She has a wonderful, accepting school environment. You're giving her all of the tools she needs to flourish. You're doing great.

I’ve sent you a pm op with a few suggestions of books etc

Hi @FirstFallopians, nursery have flagged DD (2) as having signs, but she did fine at her HV check (not severe enough for them to do anything). If you don't mind saying, what were your DD's signs at 2? I've spoken to a GP, but was told they don't do anything til age 4. I feel like I'm just stuck waiting to see what'll happen.

Dd also did ok at her two year check- I was very concerned about her speech, but the HV said it wasn’t a massive flag and just put “observe” on her file.She’d been able to do the puzzle they set her and sat listening to the book, so they were happy enough at that stage. It was only me pushing that meant we saw SLT.

She just didn’t seem like she was tuned into the same planet as the rest of us. A lot of sensory seeking behaviour, chewing, running back and forth, that kind of thing. Didn’t point, that was the thing that started me worrying.

Just want to say thank you to everyone who has taken the time to post and tell me about your wonderful dc.

There are times I feel so lonely, it is lovely to hear from people who have tread the same path and got to a place where their dc have gone on to thrive.

It looks like pandering or helicopter parenting or spoiling probably, but it's not, it keeps him mentally well and allows him to focus on the stuff I can't do for him

This is a perfect example of how you need to parent. These little things prevent the big melt downs which can last for hours - they are red rages where the child can not listen to anything - no point in a punishment because they can’t here them - you have to remain calm and model the behaviour

The other thing that helps - as they have little filter - is saying ‘Do you mean …. Thank you for helping? … So you mean ‘ you want a red ice lolly’ or whatever so rather than a telling off for being ‘rude’ you give them the correct way of asking.

What Techno said really resonates here! My DD was dx less than a year ago at 15, but after a total MH breakdown. She needs a lot more support than others and constant nudging, but if it keeps her on an even keel, then sobeit and bugger what anyone else thinks. Mine's out of school but sitting some GCSE's, finally has a couple of friends and is in a much, much better place than a year ago.

Good luck OP - you've got the dx early, which is a great start.

Sounds the perfect school for her. But is all of this written into an ehcp? If not I would look to apply for one to get everything properly in place.

ds was just a few days short of 7 when diagnosed and I remember it as a time of very mixed feelings, between relief for having the confirmation and a sense of mourning for what it means.

ds is now 13, I still have no idea what the future holds but I try my best to live in the moment. His favourite activities at the moment are blowing bubbles, splashing in water (he loves paddling pool season!) and researching every bit of history he can! He is truly unique and wonderful!

every day brings its own challenges, and I will admit that it has took its toll on my mental health (don’t be ashamed to ask for help if you need it). Day to day life is one thing it’s the constant fight for the support which is the biggest issue!

17 year old DS was a nightmare as a toddler and young child, violent to his siblings, slept badly, huge meltdowns etc.
Now is in college he has friends (very nerdy/quirky ones). Is hyperfocused on various things (unless siblings who never stick to anything). Is funny, happy and different. He has lots of quirks that we love and make him, him. He can struggle with somethings but is learning techniques.

So often I as an autistic person despair at the way autism parents are trying to push their agenda of happy on their kids bit there are SO many lovely parents on this thread!

I am a 30 year old autistic woman with a degree from a top university, who is now a senior manager in an investment bank outearning the majority of my school class. My job taps into my special interest which makes me hugely successful and my employer and colleagues is far more accepting than a school!

I am married to a wonderful neurotypical man and we have a really happy life- own house, beautiful pet cat, go on nice holidays etc. He understands me for who I am.

Something a previous poster said about giving lots of support with the basic stuff- household chores, logistical tasks etc- my husband does this for me and it makes the WORLD of difference. I CAN do those kind of things but it costs me a huge amount more effort than a “normal” person. Therefore we take them off my plate as much as possible (pay a cleaner who does a bit more than clean) and it allows me to save energy for things that I can’t/don’t want taken off my plate e.g. being able to go out and chat to my husband in a cafe! We basically chose between us how my energy is best spent because I do get very tired!

@FirstFallopians thanks for that information. I'm not even sure SALT would be interested in DD, as she has language, but it's mainly copied language. I honestly feel like nobody is willing to do anything! Nursery are being great, but they can only do so much.

SALT is definitely worth a go if you can access it; my son has been referred and he is fully verbal. He needs help with reciprocal conversation. It's also very common for children with speech delays to only repeat phrases so it would be very unlikely that you'd be turned away for this.

I guess the thing with children being diagnosed so early is no-one actually knows how things will turn out. Autism can mean lots of different things.

I have known children who have been non verbal all through preschool given 1-1s in reception and by the end of year 1 there is no noticeable difference between them and their peers. Which makes me question if early diagnosis is always best. Sometimes children are just very late developers in some areas or may have traits that disappear or don't end up leading to significant impairment in day to day life.

I have also known children to be non verbal through preschool and they have ended up severely autistic and will need full time care for the rest of their lives and specialist education.

I am sorry you are going through this but please try not to over think things. Having a diagnosis or not provides very little insight into a child's long term future. They will though as a result of the diagnosis be in a better postion to access support than their peers.

I have 2 teen dds diagnosed with ASD - one diagnosed in sixth form and the other at the start of secondary. They are very different! One struggles a lot with anxiety (to the point of making herself sick every day at one point!) - we were told by her psychologist that once she left school things would get a lot easier as she is no longer forced to mould to everyone else - she chooses what she wants to do and when mostly. And she was right. She started university this year and with support she is the happiest I have seen her in a long time. She has made friends who understand her and allow her to live as she wants to without pressuring her into doing things she is not comfortable with. Having your own agenda is not a bad thing - but makes life difficult and exhausting when you are a child whose life is mostly dictated by others. As her parent, you can influence that and I know from experience that it makes a huge difference! Little things like not expecting your child to wear 'society approved' outfits to family events - let them wear what is comfortable as long as it is practical! And eating what they are happy to eat, rather than forcing them to 'try a bit' or telling them it is good for them... Not making them hug random relatives they barely know 🙂 You are their advocate - trust that you know what works well for them and be prepared to 'be that parent' if needed. Because you are the one best placed to know!

Little things like not expecting your child to wear 'society approved' outfits to family events - let them wear what is comfortable as long as it is practical!

this made me smile, DS was 4 at his cousins christening (pre diagnosis) and I love the photos of him looking lovely and smart with the addition of his cars slippers 😀

@Sirzy and I imagine the day was better and easier for it!

@FirstFallopians Your child is the same age my son was at diagnosis, and I remember feeling very similar to what you're describing. We were told he would struggle to understand humour, would have difficulty in peer groups, could try mainstream school but may find it too much etc.
He is now 12. He stayed in mainstream schooling and they have been wonderful in supporting him every step of the way. He has a great friendship group and is well liked by all his peers. He is the most sarcastic funny guy I've ever known and has such a dark sense of humour and a delightful cheeky streak.
He has smashed so many expectations over the years and, due to being diagnosed young, he has developed healthy and effective coping strategies for when he begins to feel overwhelmed. We still have wobbly moments now and again, but overall he is just amazing. He's taught us so much and amazes us every single day. He also gives the warmest hugs. His laugh is the happiest sound around.
Through him I learned I am also autistic so his diagnosis, though hard at the time, has been the key to unlocking so much potential in us as a family.

I know it's a lot for you at the moment, and there are some exhausting days ahead of you, but I promise there are also years of smiles and celebration ahead of you too.

@ProudHag how do you go about accessing it? I'm guessing the wait would be absolutely ages.

It’s an easy thing to say, but a hard one to do, but I think you have to accept that the future you thought your child might have, may now be different. That doesn’t mean unpleasant, or limited, or any other negative thing, but just probably different.

I’ve taught children with ASD and what they have in common, is that they’re all different, just like NT children and adults are. They were in mainstream school with additional support and adjustments. They took and passed GCSEs, passed driving tests, got jobs etc.

You’re navigating new territory, but you will navigate it and you will do your best to ensure your DD has the best chance of living an independent and fulfilling life.

It’s good to hear her school is supportive and proactive. That will be important now and in the future.

My son was diagnosed aged 6, I also referred to SALT before his 2nd birthday.

Since his diagnosis school have been brilliant and he's doing really well!

Please allow yourself time ti get your head around everything. Push for an EHCP at school, apply for DLA and join support groups (Facebook often have local groups so you can arrange play dates/speak to real people in a similar boat).

OP, I have also experienced that feeling of loss, relief and sadness. In a way I think we are lucky that there are so much more resources available to us, and especially the diagnosis comes early, we have lots of time to prepare ourselves to parent in a way that works best for our kids. It is challenging of course, I find always much more prep, thinking ahead and planning is required with mine but eventually I hope it will all work out. Good luck!

Our DD is autistic. Best advice I have is to reach out and listen to autistic voices. Educate yourself but follow your child's needs - you know them best. A diagnosis is good news. Take time to grieve the parenting experience you thought you would have. Fight for their needs. Autie kids have so much to offer. 

I'm in Ireland so can't say how it works elsewhere, but here it's a case of going private and claiming for some of the costs on health insurance. But even private it's difficult getting onto a waiting list; the system here isn't broken, it's non-existent.