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Worried about autism

(19 Posts)
Susiejo77 Sun 15-Apr-18 10:01:31

My son has just turned 16mths. I started to have concerns around 13mths, he used to not respond to his name, we had a hearing test and he has moderate hearing loss - glue ear. We are due to see the ENT specialist again in 3wks time and if the test is still bad and his glue ear is still there he will have grommets inserted. Since finding out about the glue ear his name response has really improved, he responds maybe 70-80% of the time, mainly when he's not engrossed playing with something, but if the to is on, no chance he won't respond. The responding to his name is no longer my main concern now. He doesn't clap, point or wave, my husband and I are pointing at everything it is worrying, he just doesn't seem to get it. I have seen him clap a couple of time briefly in a sing along baby class, and at 10mth I thought he was starting to wave but he seemed to have just stopped and now just looks blankly at you when we wave at everything. I guess I'm wondering if anyone else has been through this and what the outcome was? He has two words only mama and dada, he babbles a lot, makes good eye contact and smiles, loves cuddles although he's not a kisser, loves cuddly toys, kicks a ball around, he doesn't pretend play really, although he will push cars along like they are driving and we play a very basic hide and seek, where he comes and finds me in the same few spots and gets super excited. He follows basic instruction, like come here, usually if I follow it with a come here hand gesture, other than that I can see he is way behind the rest of his nct class, they are pointing at objects and starting to say the words. Does anyone have any advise, or experience of what I'm going through? I'm so worried, it's sad because I want to enjoy this time with him but I'm just filled with worry.

conquerfromwithin Sun 15-Apr-18 10:59:37

Hey 😊 I have an 8 year old with autism. And our worries started when he was around the same age as your little one. For us the biggest worry was the complete lack of speech and the fact that he lost all his words after he turned 1. I know you've probably been told lots of times that boys talk later and some skills may take time to develop. Don't worry about the other babies in the class seeming more advanced, all children develop at their own pace. But for me there was a huge gut feeling something wasn't right. If you feel the same definitely mention it to your health visitor and see what they think. They may well be nothing going in and if there is you will get the best help you can. Feel free to ask me any questions.
X

Susiejo77 Wed 18-Apr-18 07:05:16

Thank you conquer from within, I feel like I'm hitting my head against a brick wall. I have been to the gp twice before about him not responding to his name, that's when we were referred to ENT and the glue ear became apparent, we are heading back to the ENT specialist beginning of May to see if the glue ear is still there.

I'm now concerned about the lack of mimicking 😰 He doescopy my husband making silly noises but that's it, won't stick his tongue out when you do, clap (although I have seen him do it randomly) wave or point. I phoned the HV and just got told he is very young and give him more time, then just two days ago I took him to a walk in Speech and language and I had to wait 3hrs with him to be told to come back in 6mths time 😰

Can I ask you if you remember what your sons symptoms were at my sons age? Feeling very alone here. My husband refuses to talk to me about it, he gets angry, I think in denial and I can't sleep - I spent my whole evening researching 😨

KT63 Wed 18-Apr-18 07:11:11

They seem to be reluctant to begin the diagnostic process until after 3 sadly.

DS1 was diagnosed at 5, DD at 4, DS2 at 3 and me at 36!

If your HV is someone who will listen, can you insist that you want him to be referred for assessment? It was my HV who pushed for ours because nobody else would listen.

ImSoExhausted Wed 18-Apr-18 07:29:33

My 18 month old has just been put on the pathway, his brother was placed on at 20 months and diagnosed at 3, so that's probably why they did it nice and early for us.

With DS1 be didn't say a word, didn't listen to anything we said, wouldn't invite you to play with him, would spin wheels constantly, would flap his arms and spin in circles, only ever have two of the same coloured balls in his hand/two spoons/two biscuits, he would drop to the floor and refuse to walk when outside, didn't respond to his name at all. DS1 said his first word about 2.5 but is still classed as pre-verbal as he isn't capable of asking for a drink etc. Anything he wants you to get he will pull you by the hand and lead you to it.

DS2 is completely different, he has some words but only about things he's interested in. He's obsessive about letters and numbers and knows the whole alphabet in both ways (A sound like 'ay' and A for apple) and can count objects up to 10. He will focus on tasks for 45 minutes plus, which is practically unheard of for his age.
He does wave, but doesn't point. He's responding to his name less and less, just like DS1 did.

Both boys would only ever seem to be able to do 3 things at a time, so last month, DS2 could say car, wave and clap. This month he can say door, use a pen and shake his head. Haven't heard him say car at all.

Every child is different, no harm in talking to your GP and Health Visitor though. We bypassed HV with DS2, our GP referred us to Pedeatrician straight away.
Feel free to message me if you want anymore help!

N0tfinished Wed 18-Apr-18 07:32:14

Another 'autism' Mum here. My DS is 10. The lack of gestures do echo what I remember of my DS at that age.

I'm not in the UK (Ireland) our diagnosis process starts with a process called Assessment of Need, maybe another poster could share what the process is in the UK.

Start with GP & and insist on a referral. The trio of indicators for ASD are delayed language, play skills and social skills. Your op describes all 3, so they shouldn't fob you off.

If you're still not getting anywhere & for your own peace of mind, could you afford a consultation with a private Educational Psychologist? A full assessment is expensive, but perhaps they could give you an indication whether they have any concerns.

Susiejo77 Wed 18-Apr-18 08:16:18

Thank you all for the advice.

When I discussed my worry to the Speeach and language therapist she asked how does he let you know what he wants. I said he pulls me to where he wants me to go and them reaches up to the worktop where the item is, such as his sippy cup or bowl of raisins. She said that if I give him a choice from two toys or two snacks does he reach for the one he wants, I said yes and she said that's what they'd expect at this age!! I'm so confused, I said shouldn't he be pointing, she said well he's getting what he wants by reaching. I mentioned the not waving or clapping she said those aren't communitive anyway, he doesn't gain anything from doing those things. I felt a bit baffled that she wasn't worried. The other ting she said is there would be no referral until his hearing condition has been resolved, I feel the glue ear may delay everything here. He does push a car along? Is that considered pretend play? Thanks for responding to me, I've felt a bit crazy going over and over everything in my head

Shedmicehugh1 Wed 18-Apr-18 08:25:12

Go to your GP and insist on a referral to a paediatrician, as you have concerns with your son’s development, regardless of his glue ear. Remind GP early intervention is key.

My son has autism. He also supposedly had glue ear, which they blamed for him failing hearing tests, speech delay etc. I’m convinced he never had glue ear. It was later identified my son has auditory processing difficulties, related to autism.

Shedmicehugh1 Wed 18-Apr-18 08:27:54

kidshealth.org/en/parents/central-auditory.html

Susiejo77 Thu 19-Apr-18 05:20:43

Thanks for all your advice. Regarding the glue ear I think he definitely has it as he's had a bout of ear infections and is constantly sticking his fingers in his ears, he gets a lot of high temperatures and we were told by the audiographer and the ENT on two sepetste occasions, he also tosses and turns in his sleep and snores and has sleep apnea. So, I think if we have the grommet surgery they will remove his adenoids also. I will ask the ENT specialist about auditory processing disorder though - thanks for making me aware of that shedmicehugh1, he already knows about my concerns for autism. We are due back at the ENT specialist in two weeks and I just feel I won't get anywhere until that area has been resolved.

On another note, So, this evening my husband and I were sitting on the sofa, my son looked at the ball in our kitchen, came over to me held my hand pulled me to get up and took me over to ball to play, instead of pointing to the ball he kinda tapped it so I knew I need to stay by the ball as he wanted to play. After dropping me off by the ball he collected my husband and we all played kicking and throwing the ball around. He loved it. I'm just curious would this be considered joint attention? I realised he didn't point to the ball, so maybe not but he was sharing attention with us and it definitely is joint play - no? Or is the fact that he didn't point and he pulled us a autistic trait?

Many thanks for the advice

Shedmicehugh1 Thu 19-Apr-18 07:55:56

I think taking you to the ball makes more sense, he didn’t want you to look at it, he wanted you to play with it!

I think that would be regarded as joint attention. However, in autism signs can be very subtle. My son for example might want my attention, however it’s very self serving ie only something that he is interested in!

At 13 months so much could be typical development, as a result of something else, such as glue ear, or possibly autism. It’s hard for us to say.

You know your son better than anyone else, trust your instincts.

This be of interest as a general guide
www.hanen.org/helpful-info/articles/early-signs-of-autism.aspx

Susiejo77 Tue 24-Apr-18 07:08:26

Shedmicehugh1many thanks for the link.

This weekend we took DS away to visit family and copied me and pointed a photography of his daddy and then later the following day he pointed at a couple of fish in a fish tank at his cousins house. Although since then no more pointing, but he has started to point to get help with things, well mostly it's a full hand but occasionally it's a point 🤞🤞

Korg Tue 24-Apr-18 07:13:11

OP, my ds was similar to yours at 24m. He also had no words. Shortly afterwards he had grommets fitted and he went from not talking at all to not stopping talking ever in a very short amount of time. He’s neurotypical and his symptoms were caused by his hearing problems.

Susiejo77 Tue 24-Apr-18 07:31:22

Many thanks Korg!!

I don't sopose you remember if your son was using hand gestures at my sons age do you? I think it's the lack of gesturing that might mean something else is going on other than his hearing? I do hope and prayer my son is in the same situation as yours.

Korg Tue 24-Apr-18 22:03:01

He’s now at secondary school so the early stuff is getting sketchy but I remember some bits because of when we saw SALT, paediatrician, ENT etc.

He was never a big waver. None of mine were, and I didn’t twig why until dropping dc2 at nursery: all the other parents waved routinely whereas I would kiss dc2 on both cheeks and the top of his head and say goodbye - we didn’t wave either.

I think ds did point a bit, although I can’t remember when, and I know that coming up to 18m I looked at the autism questionnaires: the CHAT I think and ds scored highly for things correlated with autism. But that was when he was 15m, and by 18m he’d started to do the things that he hadn’t previously done.

He did pretend play with a toy phone: we had a noisy one, and he’d always hold it the wrong way round so the speaker was next to his ear.

Susiejo77 Wed 25-Apr-18 07:04:44

Thank you for you response.

We too were never big wavers or pointers, we are now. DS does point use index finger in books and as I previously said he pointed to a photo of his daddy and some fish, not it's a rare occurance. The only pretend play he does is drive cars, it is like he driving them along a road though, we uses the arms of the garden chairs as the road. I'm just praying my son turns out in a similar situation to yours, I guess at this stag with the lack of gestures it could go either way. We are seeing the ENT specialist next week and I have videos of DS snoring and his sleep apnea as I think this is all linked to the glue ear. Can I ask you whether you proceeded with a test to find out your son was neorological typical or did you just wait to see his improvement over time?

Korg Wed 25-Apr-18 18:44:26

We waited for ds’s hearing to be sorted out before trying anything else. The improvement in his hearing was literally the day he had his grommets: he was 2 by that point and within a few weeks was talking in sentences. He still went to a SALT for a while as he picked up a stammer (which he grew out of) and his hearing dropped a bit when he was 4 and the grommets had come out. But at age 12: he’s preparing for academic scholarships, has grade 7 on one instrument and grade 5 on two more, has a super sense of humour and leaves lego and socks on his bedroom floor the whole flipping time. I remember how worried I was this time a decade ago, but it’s really turned out okay.

Susiejo77 Thu 26-Apr-18 12:11:18

Hi Korg,

Your msg has given me hope that hopefully we will see an improvement once the grommets are in. That certainly wouldn't have helped his situation not being able to hear properly I guess. I don't sopose you remember if you son at my sons age waved or clapped do you? You must have been so relieved when you saw the improvements in him!! I'm feeling like it could go either way with my son, all I can do is hope for the better outcome, but the waiting and anxiety is a killer.

DangNga Sat 05-May-18 02:43:18

I think taking you to the ball makes more sense, he didn’t want you to look at it, he wanted you to play with it!

I think that would be regarded as joint attention. However, in autism signs can be very subtle. My son for example might want my attention, however it’s very self serving ie only something that he is interested in!

At 13 months so much could be typical development, as a result of something else, such as glue ear, or possibly autism. It’s hard for us to say.

You know your son better than anyone else, trust your instincts.

Dang Nga from sidesleeperreviews.com/

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