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At what age is a child usually diagnosed with asd? When did you notice differences?

47 replies

Splandy · 11/10/2016 19:59

Hi everybody, you'll have to excuse my ignorance - I have no knowledge of any of this but am becoming quite concerned about my baby. He is going to be one in a few weeks and his development doesn't seem right to me. I've avoided comparing with my first baby until now, thinking that they're two different children, but the differences by this age are now very obvious.

I've realised over the past few days that he doesn't really attempt to communicate at all. He hasn't said any words yet, doesn't gesture, no pointing, waving or clapping. He is a classic 'easy baby'. He's incredibly quiet, though does do baby babbling. He will copy a few sounds if I do them, but nothing word-like. He does react to his name and to the word 'no', but nothing else. He doesn't like other people very much and his favourite thing to do is sit alone and leaf through books. Thinking about it, he's never attempted to get anything across to me or give me anything. Other 'red flags' I've read about seem OK - he smiles, laughs, reacts to my facial expressions etc.

I know it's very early days yet, I suppose I'm looking for a bit of reassurance or similar stories. My first port of call will be to contact the health visitor. He didn't 'pass' the communication or personal-social areas of his ten month check and they told me to contact them if no progress was made within six weeks. He doesn't seem to have progressed at all for months - still seems very much like a young baby compared to other children his age.

Is the health visitor a good place to start? Mine hasn't filled me with confidence so far, she gave me some really bad advice at our first visit and they've recently made a cock up and clearly mixed up my records with another family's, so I'm a bit wary.

Any advice is appreciated. Thanks.

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MrsSam · 11/10/2016 20:52

Hi, sorry to read you are so worried about your little one, you must be finding things so stressful at the moment. I first noticed a difference with DS when he was 2, he was baby number 4. In hind sight there may have been issues prior to that but I brushed it off because he was number 4, his brothers and sisters spoke for him and he was epileptic which could account for lots of things. Every child is different which is not very helpful when all you really want as a parent is a check list which will give you a definite answer one way or the other.

If you are worried then you need to have your little one checked, you are his mother and if you think something is wrong then anyone would be a fool to ignore you. It may be nothing, it may be ASD or it may be something else but you need reassurance one way or another. I would speak to your health visitor but if you do it feel confident in her ability to support you then you could approach your gp.

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Splandy · 11/10/2016 21:00

Thank you so much for your reply. I was trying to sound calm and sensible in my original post, but I'm really terrified. I'm sitting here bloody crying because I know something just isn't right and the thought that my perfect little baby might have difficulties and problems is breaking my heart. What things did you originally notice? I have been telling myself for a while that me and my husband are quiet people, but not like this Sad

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Justchanged · 11/10/2016 21:12

With DS we didn't know until age 6, but in retrospect the signs were there from a baby. It may well be nothing but it is worth following up with your GP as behavioural intervention at that age can be highly effective. Check out ABA videos on YouTube.

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PopFizz · 11/10/2016 21:18

Has he had hearing tests and sight tests ok? You'd be surprised how much difference both of these can make, and you can ask for tests. HV is a good start too - they often work with GP surgeries and can refer on to other agencies, especially if they've already suggested for you to ring if you're concerned.

Hope you're ok, it's a scary situation when you just felt something isn't "right" x

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zzzzz · 11/10/2016 21:25

This reply has been deleted

Message withdrawn at poster's request.

Splandy · 11/10/2016 21:28

Yeah, he had a hearing check when he was a few weeks old and was all fine. I think his sight is fine, he looks at me, spots and tries to pick up crumbs from the floor etc. He looks around when he hears noises. I think they're both ok. Should I go to health visitor first or straight to Gp?

My husband doesn't think that there is an issue. Every time I point out the lack of communication and interaction, he will come up with an example of why he thinks I'm wrong. Those examples are nice and encouraging, but don't change that he's way behind other children his age now and they're quite minor things. I can't describe to him just how huge the difference between my first and this baby is. This is his first so he has nothing to compare to. I think if he had another baby to compare to, he would understand what I mean.

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PopFizz · 11/10/2016 21:32

Splandy DS1 passed his newborn hearing check, but then failed everyone from a year until he had grommets aged 5. It meant he had a speech problem and therapy, which was a bit chicken and egg. He also has ASD, so it was all a cumulative thing.

For us, HV referred us for SALT and extra hearing tests. this was from about 9 months? GP did the ASD referall but that wasn't until he was 4.

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Splandy · 11/10/2016 21:32

Sorry, cross posted there! It's difficult because my husband really refuses to accept that there is a problem. He makes jokey comments to calm me down and thinks that I'm overreacting and googling too much. I really haven't googled that much because I am terrified. He believes that everything is fine with him. I've never even seen evidence that he can extend his pointy finger, let alone seen him do it towards something. He's never babbled at me to get me to understand something. I mean, he does do some things and I wouldn't say I've seen things I'd consider severe, he can play peekaboo and finds that fun and smiles when I do funny things, but I don't feel like we communicate at all.

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Splandy · 11/10/2016 21:35

PopFizz, that's interesting, I didn't realise that could happen. I will definitely ask about it, but still not sure there's an issue with hearing, he responds to his name and to being told no. He recognises my voice when I'm out of sight and looks for me, that kind of thing.

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Splandy · 11/10/2016 21:37

zzzz, that does definitely make me feel better. And when I stop and think, we do do jokey things now. I whisper his name in a certain way and he turns around smiling because he knows I'm playing. He laughs at his brother running over to him. But other things still don't seem right. It does make me feel better though, thank you.

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luckythirteen · 11/10/2016 21:38

Hi Splandy, I was in exactly your position just a few months ago! I felt worried about one of my twins' social skills/communication too and it all began adding up, around the time he turned one, to be more than just niggling worries. My GP was fortunately very understanding and we have since had an assessment with a paediatrician, who is referring us for hearing tests and SALT/portage intervention which may lead us to a diagnosis. He may have ASD, he may not. I completely understand where you're coming from with feeling so upset, I still have a little cry every now and then but I feel better knowing that, whatever the outcome, we are on the road to getting some help, which could make all the difference. As previous posters have said, it could be nothing, but there's no harm in getting it checked out for reassurance.

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PopFizz · 11/10/2016 21:41

Splandy, my 10yo DS is ASD and he's amazing. He really is. I won't lie, it's been hard a lot, but he's an incredible boy, and he is loved by so many staff and students at his mainstream school.

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MrsSam · 11/10/2016 21:58

Splandy, just as popfizz says my DS4 passed his newborn screening and wasn't diagnosed with moderate/sever bilateral sensorineural hearing loss when he was 6. His hearing problems were evident to me but everyone else thought he was fine as he lip read very well and had passed newborn screening so it's certainly worth looking at.

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Splandy · 11/10/2016 21:58

Thanks you two, you are cheering me up. I am getting ahead of myself, getting this worked up when at the moment the only thing definite is that I 'feel' something isn't right. luckythirteen, what exactly was it that prompted you to go to the gp? Did your husband share your concerns or was it just you who thought there could be an issue? I think my husband is actually almost offended at the moment that I'm saying these things about his baby.

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Tonsiltennis · 11/10/2016 22:06

My eldest has ASD and I knew something was amiss from about 18 months. He had language and then started losing it.

But by way of reassurance my second child spoke late, didn't make eye contact, was slow in every way. He's 5 now and he absolutely never ever stops talking/dancing/chatting. I would never have believed it. Development is in fits and starts, not a linear pattern. X

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Splandy · 12/10/2016 14:00

Hi all, I called the gp today but he told me I should contact the health visitor because they can do 'tests'. Had a phone call with the health visitor who didn't seem to understand my concerns. She seemed to think that my main concern was that he doesn't speak. I'm far more concerned that he doesn't communicate in any meaningful way or understand simple things. She went through the questions from the ten month check and he again failed it. She is referring us for a hearing check, which I don't think will find anything. She told me that he's too young to be referred to anybody for speech and language and that he's too young to even think about asd. Then told me she would send a booklet of suggested activities over, with examples such as reading books, singing, doing nursery rhymes, talking to him during everyday activities... All things I've done every day from a very young age. They're going to come and do a home visit, so I can discuss my concerns in more detail, but it seemed like they were basically telling me they will do nothing until he is older and even further behind.

Her helpful activity suggestions made me want to cry, to be honest. There was nothing useful that she could suggest that I don't already do. At what age can a child be referred for anything? I suppose I can see the doctor again if I'm not happy after the home visit. I feel really down about it all today. Everything I've seen online says that the earlier they receive treatment, the bettere it is for them, but nobody I spoke to today seemed interested.

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Tonsiltennis · 12/10/2016 14:28

I can hear your panic! Flowers What is it that you think he should be doing? You've said he babbles, smiles and reacts to his name and to "no" and copies. What do you feel is missing?

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FrayedHem · 12/10/2016 14:44

You should be able to self-refer to SALT. Some areas do drop-in clinics, mine doesn't but it does have an online referral system, so have a dig around your health authority website. That being said, as your child is just a year you may find it more difficult to get seen. Have a look at the talking point website for the ages and stages and progress checker. www.talkingpoint.org.uk/node/350/take.

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MrsSam · 12/10/2016 14:54

Take the hearing test referral as a good thing. IF and its a big if and not one to panic about just yet, if he has any ASD or any other communication problem then a hearing test would be part of the assessment process. I know how frustrating and worrying it can be to think there is something wrong with your child and I maintain that if you think there is a problem people should listen to you. If the health visitor wasn't listening to you then she wouldn't have referred him for the hearing test so that is a positive step. It's also really frustrating, and I speak from experience, to be given advice about games to play with your child and activities to do with him/her when you have been doing exactly that. It feels like a personal attack on your parenting but you must keep in mind the health visitor will be dealing with the full spectrum of parenting and will also have specific suggestions for specific issues. Please don't feel you are being ignored and that no one is taking you seriously, any social communication problem takes a very long time to investigate fully, it's a long process. Take it one step at a time, keep a little note of things which concern you and the date and if and when you need it it's all there. Wait for the hearing test and take it from there.

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Splandy · 12/10/2016 15:17

Thanks. You're right, I am panicking. I feel absolutely gutted. I don't really know what it is that's wrong, just feel that something is. He babbles a lot less now than he used to. He could do the bababa dadada sounds, and he does do them occasionally now, but mainly says 'ooooo'. Not sure whether that's just a funny phase though. What really bothers me is the lack of communicating things to me and understanding things. He's never pointed at anything or tried to get my attention. He would never bring an object over to me, or try to let me know he wanted more food or anything. He doesn't wave or clap, just looks at me blankly whenever I show him. Most games and nursery rhymes get no reaction. He can copy two sounds, one of which is 'aaaaah' and the other is sticking his tongue in and out making a funny sound. He can't copy bababa or dadada. I feel like that two way interaction is missing. I could say things to my eldest and he would understand and respond. When I talk to him during our normal daily stuff, there's never any hint that he's understood or is trying to tell me anything, he just quietly sits there. If I try to point at a toy, he stares at my hand. If I ask him to 'come here' he just looks at me blankly again. I've been trying all of these things for quite a while and getting nowhere. So I can't pinpoint exactly what it is, he does do some basic things and definitely knows his name, but that alone doesn't make me feel sure that everything is ok. He seemed to be doing just fine when he was a bit younger, but as he's getting older these things are becoming more noticeable.

I answered the questions on that list and it said that I marked no to some important questions. The health visitor has called back and said that she's spoken to a colleague and they're going to do a more in-depth test and then come out and review it with me. I'll just have to see what happens. I need to stop panicking about it, to be honest, because I know it's not as though I've turned around and noticed that my baby makes no noises and doesn't even look at me.

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Splandy · 12/10/2016 15:23

Thanks MrsSam. You're totally right. I feel as though some instant action should be taken because I'm concerned and that every second with no action is another second wasted, but I'm sure I'll calm down a bit as time goes on. It feels like an emergency to me at the moment, I only really started to allow myself to think that something could be wrong within the last few weeks. I do feel pleased about the hearing test, and feel happier knowing that they're now going to do another assessment. I also feel guilty for thinking that there could be something 'wrong' with him, as though I should on,y be considering him as the pinnacle of baby perfection. It feels disloyal to say that I think there could be problems. He's looking at me with his angelic little face, not aware that I'm thinking that he isn't doing the right things.

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Splandy · 12/10/2016 15:30

I think she said it was a SOGS test. Not entirely sure what that is or how easy it is to assess a child this young! Does anybody know what it will involve? I have no concerns with other areas of development.

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paulweller73Murielswedding · 12/10/2016 15:56

To answer your OP, my daughter was around 15 months when I started noticing her lack of interest and interaction with us. She was a very self contained, easy toddler, happy in her own little world. As she approached 2 and had no speech or inclination to speak I set the ball rolling for assessment. She had several hearing tests which were inconclusive due to her not complying or understanding the instructions.
She was finally diagnosed with ASD aged just turned 5. From starting nursery the staff, speech therapists and educational psychologists were all over her. Maybe hers was an "obvious case" as no one told us we were imaging or exaggerating difficulties.
To echo what I think Zzz said, it isn't half as grim and desperate as I thought it would be.

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paulweller73Murielswedding · 12/10/2016 15:57

BTW, her hearing was fine and like you, I never had any concerns about that.

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IsItMeOr · 12/10/2016 16:14

DS was 5 and a half when he was diagnosed. There were signs before that point which contributed to the diagnosis/fitted with a diagnosis, but not the "classic" things that I knew at the time.

Babies develop at such different times and ways, that it's really hard to make a diagnosis as young as 1 unless there is something very marked to go on. In any event, with DS, he passed all the tests, as they are pretty broad-brush and not perfect. It wasn't until he started school that he was consistently having problems, and it took quite subtle testing to spot the root of his difficulties.

DS is outgoing and kind, loves making jokes, is bright and fantastic company. There is some good support available if you need it - these SN boards are a good start, and we found the early birds course really helpful.

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