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Behaviour/development

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Speech delay. Autism?

77 replies

7raina · 09/04/2019 09:27

My 3 years old has speech delay she was bright was making effort to speak but then it disappeared around the time when my son was born. And I thought it was sibling rivalry (they have year gap between them)
But fast forward to her 3rd bday no speech. Few words and she only speaks when she wants to.
I've been searching for over a year and I convinced myself she is (God forbid) autistic
She doesn't role play no imagination and started hand flapping.
My husband refuses to listen to me he thinks I over exaggerate things. We both r highly educated and although she hasn't been diagnosed I'm broken I had high dreams for her.
Her speech therapist yesterday said she has some traits of autism
We had private assessment and they told us it was just speech delay
Im so stressed for a year I don't sleep much I worry abr her all the time
Now I'm scared that both my kids r autistic
I don't knw wt to do
I wana cry and scream why
And yes she used to be on mobile/iPad all the time since her first bday I took it away 2 weeks ago and seen improvement
Plz only positive comments story
As I'm verge of nervous breakdown

Thanks ladies xxx

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AladdinMum · 09/04/2019 10:01

A speech delay or hand flapping is not concerning if thats all it is, however I agree that lack of role playing at 3 years old is concerning.

As she cannot talk, how is her gesturing? it should be strong to compensate for lack of speech. Does she point to share interests like a plane in the sky? does she point to request items that are out of reach? does she nod her head for yes and no? does she bring you items to show them to you (so not for help but just to show you, for example a leaf that she finds in the floor)? If it is autism there will be many signs at this age.

7raina · 09/04/2019 15:29

She doesn't show or share her experiences but she does points at things she wants
I'm losing hope for her
M worried for my boy
I don't knw wt to do
I feel like dying

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AladdinMum · 09/04/2019 15:52

How old is your son? what are your concerns?

As for your daughter I think you have valid concerns, and she should be referred to a development pediatrician. I find it concerning that she is not sharing interests by showing or pointing them out, lacks imaginative play while at the same time showing expressive language delays (I assume she is also delayed in receptive language) - these skills would normally be expected by 18M. If it turns out to be autism it is not the end of the world, with the right support and help she will make great progress.

7raina · 09/04/2019 18:47

Did u actually say it's not end of the world? How insensitive I'm fuming

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Summ3ers · 10/04/2019 09:00

Hi ya. I totally understand the worry and sleepless nights that you are talking about and for that alone I’m sending you a virtual hug. I have also suffered from anxiety worrying about my now 3 year old son. I have worried myself sick, googled into the night, phoned various charities etc for advice. I have watched how his peers have progressed with their language development and he has stood still. I have been told many times not to worry, he’ll catch up, his first cousin was the same blah blah blah and I’ve found such responses both dismissive and even insulting. My little man has had lots of health issues, liver problems, reflux and now speech delay which has intensified my worry.
So what has helped me? Well first of all I went to the Drs about me and as I result I am receiving cognitive therapy through the NHS via phone calls which is beginning to help. I have battled to get him as many services as possible. He does receive speech therapy but I think we are going to go down the private route too. He has had an initial ASD assessment and is now on the waiting list to have ASD assessment (which is a two year wait in our area). However, progress is being made and I think a lot of his difficulties is due to his speech. He has only recently started to role play and will now interact with others (which he wasn’t doing a year ago). I was reading something the other day which said that some children are being wrongly diagnosed with ASD and really need strategies for helping to develop speech instead. Something else that has really made a difference is joining various Facebook support pages. I follow one that looks at the benefit of following certain protocols involving fish oils etc and I have noticed a big difference in just 4 weeks. Sorry this has been so long. Didn’t want to read and run.

AladdinMum · 10/04/2019 10:30

@7raina With all due respect, my comments were directed to some of your comments which sounded incredibly extreme and unfair to the child ("I'm verge of nervous breakdown", "she is (God forbid) autistic", "I'm losing hope for her"). First of all you need to help yourself by treating your anxiety, otherwise you will struggle to help your daughter and she will need you the most now. I understand your worry, believe me I do, but you are thinking of worse possible outcomes. I have had the privilege of following many children with autism in their development and the majority, with the right support in place, made great progress, are happy and eventually meet all/most milestones that other neurotypical children do, just at a slower rate and usually in a atypical order.

You said that you are highly educated, then be logical about this for your daughters sake, you need to put a plan in place. A child not pointing to share experiences, not showing objects of interests, not initiating imaginative play by 2 years old is very concerning and in most cases would be autism. However, she is now 3 years old, she can point to request which is more than some children with autism can do at that age, so if she is diagnosed it will be unlikely to be on the severe end. She is now old enough to be referred to a specialist at the NHS, so start by going to your GP, they will probably first refer you to SALT, but keep pushing for a proper evaluation. She will need to eventually be seen by a development pediatrician, as a speech therapist, GP or general pediatrician have little to no experience in this area. Being assessed by a development pediatrician will allow her to gain access to the support and tools she will need. There can be long waiting lists in the NHS to be seen by a development pediatrician (can be up to 2 years) so it's imperative to start as soon as possible (or go privately if at all possible).

Like the previous poster said, there is a lot of help and support out there.

7raina · 10/04/2019 11:32

Hi summ
I'm so glad for ur little man bles. Thank u so much for taking time to share ur story. It's given me hope. My daughter is receiving speech therapy we had pvt assessment done and they said it's not autism. But nhs said she has some traits. M gona do we u said just carry on trying my hardest and hopefully we'll get there.
I'm gona ask for help for myself but tbh at the mo all I think and care abt is her.
Thanks gain sweeti xxx

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7raina · 10/04/2019 11:36

@ alldinmum
U didn't read my post did u
She's receiving therapy etc
And I'm surprised u work with autistic ppl
Anyway I think ur comment was insensitive and rude
And I'm not gona waste my time on it as I came here for positive stories/advice not to get stressed
Thanks

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AladdinMum · 10/04/2019 12:15

@7raina that is fine, you do what you think is best. If your private assessment was not with a development pediatrician using a recognised method such as CARS or ADOS then unfortunately autism will not be ruled out, specially in girls. As for therapy, I was not referring to speech therapy, speech therapy is offered broadly and she will need other forms of more precise therapy, at the very least OT and ABA. Good luck and I really wish you the very best in your journey, don't stop advocating for her :)

7raina · 15/04/2019 12:43

@AladdinMum DO NOT TALK ABT MY DAUGHTER!!!

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BeeMyBaby · 15/04/2019 23:47

Calm down OP. I'm not usually s fan of Aladdin mums replies, far to doom and gloom (perhaps more realistic than I am willing to hear), but I thought she was helpful.

I have a 3yo DS who also has a speech delay but I am abroad just now so have no access to speech therapists etc. I spent along time checking exactly where his speech was at age wise on various charts. I worked out it was roughly a year behind where it should be, but in my head, I imagined it as a centile line like height. He seems to be following the line (his speech is developing and he is still a year behind, 6 months later). Once they hit 4-5yo, there is not a huge difference in speech to say, a 9yo, so I'm hoping by the time he is 5-6yo he will have caught up in time for school. I'm not sure if my ramble is helping, but you did note that your daughter is improving with her speech at least.

7raina · 16/04/2019 06:56

@BeeMyBaby thank u. I'm
Trying v hard with her and yes overall her attitude has improved . Xx

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thupre · 29/04/2019 03:08

@ Summ3ers ,

Reading at your message, i'm getting some hope as well for my daughter. In your story you have mentioned about fish oil and you have seen big difference in 4 weeks time! could you please share this in detail what is that and what you did to see progress in your son? My daughter is 2.5 years, speech delay and some behavioral issues.

So far she is not into any threapy, time is just flying with her appointments only so far no diagnosis and no therapies. I'm really worried, please provide me some tips on how we can help help her ?

@7raina

I can relate your story with mine, every single day i'm thinking about my daughter and not focusing on anything else. In your 1st message I felt your worries and pain, in your last message happy to read your message saying "her attitude has improved" could you please share her progress (it is really giving me hope) and how you achieved it?

Thanks to all mums who are here to share their experience and there time for giving support!!

7raina · 29/04/2019 10:21

@thupre hi hun
Time does fly
I don't let her watch tv/iPad/mobile all day long. Just hour to 1 1/2. Taking her out to children centre, parks and diff activities (swimming, etc)
So that she can observe more is exposed to diff situations.
And when she tries to say a word I interpret it and suggest words. Be a broken record say words over and over. Start with one word rather then whole sentence.
Use flash cards if she likes it.
And nursery is magic place if she's willing giv it a go. My daughter started last week she was happy.
Wts her play like? How does she communicate with u?
I'm so stressed that my hair is actually turning grey 😭.

Xxx

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7raina · 29/04/2019 10:24

@Summ3ers ya plz share how fish oil helped? Also I said he has had asd assessment, how did that go?
Xxx

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Summ3ers · 29/04/2019 17:21

Hi ya. Regarding fish oil, I follow something called The Nemechek Protocol which is a protocol which involves giving children fish oil, inulin (which is a prebiotic) and olive oil. The best thing I can suggest is to google it and look up the Facebook pages dedicated to it. The dosing is very strict depending on age etc so you’d need to read the book. Also, the actual ingredients are very specific too (in the fact that they have to be v good quality and from recommended suppliers). We are on a 2 year waiting list at the moment for ASD I’m afraid. Xxx

7raina · 29/04/2019 19:37

@Summ3ers thanks hun il look it up.
If he's making progress don't be scared. My daughters therapists told me most children grow out of Autism like traits.
Xx

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Summ3ers · 29/04/2019 22:31

Aw, thank you. Xx I go through stages of worrying myself silly one moment then feeling all is ok the next.
We’ve been following the protocol since March and I believe it’s definitely helped my little man. Xx

thupre · 30/04/2019 00:13

@7raina,

Yes thank you for the tips, i completely agree talking to them n taking them out will help. Don't stresstoo much, as summ3ers said I feel so depressed for a moment then next minute i feel she is ok, i shouldn't worry much. This battle goes every day.

But one thing is, we know that our kids have dealy but instead of worrying on that we should focus on what needs to be done to fix that, we should stay positive n confident( though we have pain inside), because if we go down, doors of opportunity for our kids to catch up will pretty much close.

What I'm trying to say is, if we are strong enough then only we can take care of others (both emotionally n physically), if we are not then it will become like someone else should take care of us. So mums please stay strong n positive! God will definitely hear our prayers n will help us.

About my daughter she always likes to be surrounded with people (but with family or family member beside her when she is with a group of people).

She doesn't tell any meaningful word (she will be 2 n a half for this may), just says mama that too not frequently, when i ask her to say mamma she says but doesn't say by herself when she needs me. She points to things what ever she wants and babbles. For water she shows tap or open cupboard n takes cup n babbles! This is what her communication is. Sad

She has elder sister n likes to play with her n copies what ever she does. She puts all toys in her mouth rather than playing with it. I'm really scared for that and doesn't show any interest in the things outside the house. She just stares at itSad

@summ3ers, thanks for the info about that fish oil, i will go through itSmile.

Hoping for the best!

7raina · 30/04/2019 13:40

@thupre ya hun ur right. I'm trying to stay strong and I'm defo hopeful. She's pointing that's awesome that's v good sign. Don't wry if she's putting toys in her mouth. Most normal
Kids have quirks too.
I had loads and still have them but was Neva diagnosed with anyfin.
Saying that my older sis was delayed and started speaking at 6. Mum says she was pretty weird would stare at evyfin or screams hates clothes, but after many examinations peadiatrican said she's delayed nofin serious and after ongoing therapy she slowly caught up. Mum tells me she started pointing around 3 and half and once she started speaking there was no looking back.
She's so bright and has mathematics masters degree. So ya lots of late talkers in my family
Keeping fingers crossed.
Love and lots of prayers for all kids xxx

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Peacingout123 · 30/04/2019 20:25

I think it is important that you keep yourself in check. I have the same worries as you do with my little one to the point of no sleep and not functioning as normal. I am in counselling and will likely be starting on meds to help me cope. Its not the Autism possibility that os worrying so much as the possibility of it being a severe intellectual disability. At this point Autism does not really concern me too much especially if it is mild. Like a previous poster I have worked with kids on the spectrum. Sure, they are quarky. But they are all amazing kidos who enjoy life just like the rest of them. Most gain skills just at a slower pace or in a different way. As for your daughter, I asked the developmental pediatrician about when dramatic play is expected as my lo has been pretending to talk into a phone for months and using other objects as phones but has yet to feed a doll or anything like that and he said by 2 years. I would also be concerned of she is not pointing for interest, cant follow a point , showing and giving. I would ask to be seen by a Developmental Pediatrician and see if she can be asessed for Speech and maybe an Occupational Therapist.

7raina · 30/04/2019 21:25

@Peacingout123 I feel like I need support but at the same time I don't wana be focus at the mo. I just am trying to do evyfin to help my daughter.
Yes, she is gona be seen by paediatrician. Recently, she has started to point not all the time but yes she has! And I'm
Happy that she's making progress.
How old is ur lo? Has he got speech delay?
X

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7raina · 30/04/2019 21:25

I don't wana focus on myself**

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7raina · 30/04/2019 21:27

Ru suggesting my daughter may have severe intellectual disability?

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7raina · 30/04/2019 21:28

@Peacingout123 ru suggesting my daughter may have severe intellectual disability?

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