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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To wish for my ASD child to come out of their own world?

21 replies

Lordfingal · 23/03/2024 15:50

Having a low, defeated day.
Our DD3 is autistic (not officially diagnosed yet but on pathway). She is the light of our lives, happy and can speak to make all her needs/wants known. The rest of the time she is scripting lines from her favourite stories or tv shows, won’t engage in play with us and still ignores us even if we just try to parallel play and generally doesn’t acknowledge anyone - I have done the Hanen More Than Words course and I’m currently working my way through Meaningful Speech course as I think she’s a Gestalt Language Processor. We’ve also tried lots of private SALTs with not much progress. So basically I feel like I’ve tried everything and we’re not seeing much progress speech wise (she’s been able to verbally request her needs/wants since she was 2 so not much progress over the last year). I’m so grateful that I get to hear her voice but I also feel sad & defeated and I’m trying so hard everyday to engage with her and follow her lead but I feel like I’m banging my head against a brick wall now.
When did your ASD child start to come out of their own world/conversing with you, if ever?
I know they are all unique but I do wonder, if for the sake of my sanity, I need to just take a break and wait and see if she’ll come out of her own world/let us join her world when she’s ready…with no early intervention cos none of that seems to working 😢
Would love to hear other’s experiences!

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IncompleteSenten · 23/03/2024 15:53

Be careful what you wish for.
Mine were so much happier in their own world than they ever have been trying to cope in ours.

IncompleteSenten · 23/03/2024 15:56

Sorry. That's really depressing isn't it.
My eldest dx 2.5 started talking at about 7 but at toddler level. He's now 24 and doing his masters. He drives. He just got back today from a week in a hotel. He's very chatty.

My youngest (dx 3) was exclusively echolalic till about ten. He's 23 now and can talk but chooses not to a lot of the time. He can be chatty but entirely on his terms. He likes to use bsl to give basic answers when he doesn't want to talk.

Autumcolors · 23/03/2024 15:59

When you say you have met with lots of private SALT - could you elaborate? How many appointments over what period of time.
ND children can be younger developmentally than their natural age.
A loving, kind environment is a wonderful place for a child to be.
Maybe some therapy for you to help you process your very normal feelings would be helpful.
as a parent of teens I can say my children when very little are so very different to my children at teens/young adults.
Be her advocate, love her. Choose therapies carefully and encourage her interests.

Pumpy001 · 23/03/2024 16:00

So impressed that you did the hanen more than words course, im starting that soon as dd is non verbal and 2.

I got hair Analysis results back today for my daughter, shows low zinc, high aluminium and high lead... so ill be dealing with the metal toxicity levels now.

Youre doing amazingly and never think otherwise!

My best friend has 3 asd dc and they're 9-13 and now all out in the open and thriving. She didn't do half of what you have already done ,so give yourself a break! I wish you immense luck x

Lordfingal · 23/03/2024 16:05

@IncompleteSenten not depressing at all, I completely understand your point.
For my DD I guess I have a gut feeling that the words will come or she has the ability to communicate succinctly but some days, like today, I feel defeated and think how can I help her get there when 90% of the time she acts like I don’t exist 💔
Your boys sound lovely

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mondaytosunday · 23/03/2024 16:09

My niece is 13 and still lives half in her own world. She does engage with people, has some speech, but you can't have a meaningful conversation at all. She's happy though, most of the time.

Gladespade · 23/03/2024 16:09

Easy to say, but try to relax a little, at 3 mine definitely couldn’t articulate her needs and wants, so there was a lot of guess work, still is to be honest, so that’s a positive that your dd can express what she needs. I’ve found the best thing is to be led by dd and her needs and not to compare with other children and what she ‘should’ be doing. She is a unique person whose brain works differently from other peoples and honestly it’s quite fascinating. It may mean things aren’t exactly as I expected but that’s okay. To answer your original question, I felt like her awareness increased dramatically in year 3, this was a good and bad thing as she also became aware she was different. You sound like a very engaged parent who is doing a great job, you won’t go too far wrong.

Lordfingal · 23/03/2024 16:10

@Autumcolors in terms of SALT we’ve met with about 5 different practitioners who have all said the same thing and sent us away with Hanen More Than Words strategies and “parents are the best therapists for their child” line. My DD refused to engage with any of them so I can understand why they took this approach.
But when researching best support for autistic children, SALT is always mentioned and I find that frustrating as it’s just not done anything for my DD.
I am absolutely her advocate and biggest cheerleader AND, selfishly after going through so much to have her, I just want to be able to connect & communicate with her ❤️
And I agree some therapy for me would be helpful, thanks for your kind words

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Lordfingal · 23/03/2024 16:13

@Pumpy001 thank you for your kind words.
The Hanen course is very good so I really hope you see success with it ❤️

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Lordfingal · 23/03/2024 16:15

@mondaytosunday thank you and as long as they’re happy that’s really all that matters. Some days are harder than others though

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IncompleteSenten · 23/03/2024 16:18

They are. 😁

It takes as long as it takes and I always say their path may be different and that's fine. We guide them to be the best version of themselves, whatever form that takes.

When mine were three they weren't talking. My eldest was aggressive and my youngest was completely absent. We were told we were in denial, that out eldest needed to be in a specialist environment, that he'd never talk, never come out of nappies. Our youngest didn't respond to his name. We were told he doesn't understand the concept of his name.

I spent hours every single day on the floor talking to myself, playing with toys, blowing bubbles, making noises, making really exaggerated facial expressions eg big grin and saying HAPPY face, frown and saying SAD face... Etc etc and expecting absolutely nothing.

Eventually you get a tiny breakthrough then nothing, then a little more then nothing and the only thing I can say is do your best but just enjoy her. She's wonderful and whatever her future is it will be great because she's got you working so hard for her.

Lordfingal · 23/03/2024 16:26

@Gladespade thank you, your little girl sounds lovely and lucky to have such a supportive mum. Their brains are fascinating, I know my DD is so clever, I’d love to be able to join her world just a little bit and know what she’s thinking a bit more…

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Scattery · 23/03/2024 16:27

You sound like a lovely, engaged mum!

If she scripts, can you script back? My son loved a good conversation where he knew all the words already - we'd quote the Night Garden to each other, for example, and then slowly I started "messing up" the words or "forgetting" them (always playfully) and then he would giggle and fill in the words. Did this with songs too and books.

SerenityNowInsanityLater · 23/03/2024 16:55

I think acceptance on our (parents’) part and time both work a lot of magic. When I understood that enforcing neurotypical patterns on a neurodivergent child was making me the architect of my own misery and actually discouraging me from deeply understanding my child’s needs, that’s when the record changed. I think having two neurotypical older siblings made the social experience harder initially. I had expectations based on what I was familiar with.
Autism is unfamiliar. And then, time and acceptance of how our ASD child is (not ‘who’ they are. We already know that), and what pleases them/what they actually want and need, becomes clear.

Social engagement was something that did happen and evolve over the years. But it was at my son’s pace. Having a child with autism reframed my mindset and approach to how we rubbed along in the household. Low stress. Lo-fi, I like to say. I learned what stressed my child and also, what stressed me. Was I helping or pushing too hard? I’d step back and readjust my approach. I was now using a different port of entry to my child’s inner workings than what I was used to. I had to be patient with myself as I familiarised myself with his needs.

I think the early years of parenting a child with autism is a dance with acceptance to the rhythm of love (full permission to want to slap me silly for sounding so trite to the point of nauseating! 😆). But love is what gets you through this difficult period of understanding autism and what it means for your child. We just want life to be smooth sailing for our kids because we love them so much! We want the world to be a safe and friendly place. The world is hard enough when you fit in! When you’re the parent of a child with autism, or just a parent full stop, your will is to bend and shape the world into a less hostile environment for your child. Over time, you’ll do it in your sleep. And over time, your ASD child becomes so much more adept at engaging. But I’m applying this statement to the children with autism who are capable of speech and who are capable of utilising their language skills to communicate their needs. I just feel like I ought to add that.

What helped my son, acutely, was group speech therapy at age 3-4. My son learned when to speak, when to listen, how to listen. The therapist did this through playing ‘cause and effect’ games (which children with autism tend to respond really well to). Hungry Hippos, Barbecue Party, and other cause and effect/action and reflex games can be a real hit. Kinetic sand is another great activity to connect with your child.

Going to a really supportive mainstream school has been a godsend for my son. He’s in year 5, loves facts and fact books, loves reading, loves Nintendo, and playing Uno, Exploding Kittens, and Poetry for Neanderthals. Though I really believe the group speech therapy he did in his early years was essential because it taught him the social cues of communication. It taught him how to utilise his speech to connect with others and how to respond to the world around him without it becoming an overwhelming experience.

Notsoflirtythirty · 23/03/2024 16:58

My son was pretty much non verbal at 3, was cognitively assesd to be 9 months old. I kept him back a year from school because by 4 years old he had limited speech. Wasn't at all interested in talking to me or anyone else.

Let me tell you this, he is now an incredibly annoying (as his sister would say) nearly 11 year old, who doesn't stop talking. He still has his introverted time's. But he has friend's, a great sense of humour. Is only around 1 year academically behind.

It's so hard when life feels so unsure for them, that you don't know where the future is heading or what the next year will hold for them. All I can suggest is keep talking to them, keep playing with them, just keep loving them and being the wonderful mum. My son remembers conversations and things I would never have dreamed he would have. She will be taking in much more than you realise. No one here can tell you what is in the future but don't give up yet x

AmaryllisChorus · 23/03/2024 17:03

I don't have the same experience, but I have a parallel one. DS is autistic and he had severe ARFID. Just wouldn't eat anything. Threw up if he did. He was starved and starving as a baby, toddler, infant. It was so distressing. People thought I abused him. People tried to force feed him behind my back.

I tried everything. Nothing worked. Or so I thought. But because I kept trying and trying and trying and trying every single trick I could think of, eventually they worked. He is now an adult, and as easy to feed as most neurotypical people. He still struggles to eat when stressed, but in general his eating habits are normal. I look back and realise that what I thought was spectacular failure on my part is one of the most successful things I've ever done in my life. I'm prouder of not giving up (not using food substitute shakes or tube feeding) than almost anything else.

The thing is, autistic children just take way longer to process, absorb and apply learning from outside sources. It doesn't mean you are not having impact. It means you may need to do something 1000 times before it sinks in. With food, DS needed new things introduced casually, as options he could have if he wanted about 1000 times before he'd try them, the average for a neurotypical child is 20 times. So it took five thousand percent more effort from me to reach the same target. But it was reachable.

Keep doing what you're doing. Take the stress away, just do it without expecting a result or pushing for one. Don't over focus on the outcome, Just keep at the process with as light an attitude as you can. It can't hurt. It could transform her life.

Dotdotdotdot19 · 23/03/2024 19:12

With regards to the SALT, when we first tried with my non verbal DD she was two and a half and it was a failure. She wasn't interested in them and nothing worked. Now she is 5 and after about four sessions it's working for her and her attempts at verbal communication ate massivley increasing. So it might be a timing thing?

I often feel that my DD is replying to me in her head and just hasn't quite clicked that I can't read her mind. I live in hope that she clicks and I get to hear what's in her head! I have so many questions about her line of toys!

TheFancyPoet · 23/03/2024 19:23

I cannot express how wrong you are here. This world wants to put people under labels and cliques and niche boxes for all out there to see how right, amazing, normal and straight you and yours are. Why do you need this? Because someone from next door will compliment you????

you are given a special amazing child who sounds totally amazing. Dive right with her into how she is created and explore her world with her and taylor her life to what her needs are

Letsgotitans · 23/03/2024 19:43

She is 100% a gestalt language processor. Is she well regulated? Some therapists think that the scripting can be a sign of dysregulation. I've been training in VERVE which is similar to hanen but focuses more helping the child be regulated. Also, might be worth looking into a SALT who specialises in high tech AAC. She might be able to access more sponateous language through that compared to verbally.

Forgot to say, if she is dystegulated I would also recommend an OT who specialises in sensory differences (some only work on motor skills).

Hungrycheese · 24/01/2025 17:44

@Lordfingal my son is the same. He is 3 years 8 months, he is on his own world scripting but he can ask us what he wants. Please may I know how is your DD is doing now. I hope her scripting has been reduced and she is having conversations with you.

Lordfingal · 24/01/2025 19:45

@Hungrycheese my DD is just over 4 now and I wish I could say she is fully conversational by now but sadly that’s not the case. I honestly had hoped we would have seen a huge increase in her speech by now as you do read positive stories on mumsnet about language explosions, and children being so different now to how they were at 2, etc.
My DD still has a vast vocabulary of nouns and can make all her needs and wants known. She is probably scripting less now. And I would say she is less in her own world now but she is still incredibly hard to engage, but now it feels like she knows we’re there but she’ll engage on her terms/when she feels like it, whether that be to come for a big cuddle (which she does often and I’m so grateful for), or to ask us to go somewhere, or to ask us to spin her round/throw her in the air/tickle her/etc! She can answer yes/no questions but still will ignore you (or doesn’t have the language yet) if you try an open ended question.
I also see her now observing more, for example, her little sister playing with something fun and my DD will be watching her out the corner of her eye.
So yes, she is definitely come out of her own world but it is very controlling about who and when she lets you in, I hope that makes sense!

Other progress is she is fully toilet trained, this happened about 3.5 and at one point I thought it would never happened but then it clicked and she runs to the toilet now, gets herself up on toilet, even at nursery. She can sometimes struggle with wiping and pulling her pants/trousers up properly but she is doing amazingly.
She is also loving nursery and doing well there, starting to follow instructions, follow the routine and sometimes participate in group time. She doesn’t play directly with other children yet as I think she find them to unpredictable. So she will often tell them to move or go away if they come too close to a toy she’s playing with - I’m just so happy she’s starting to advocate for herself, I don’t care if she’s rude!

Sorry if this wasn’t what you wanted to hear but I wanted to reply as I love seeing others updates on their children and how they have hopefully progressed. I would recommend reading up on Gestalt Language Processing.
I’m hopeful that ages 4-6 see big leaps in her conversational language ❤️

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