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What were the first signs of autism in your child and how old were they?

(19 Posts)
Fairylea Fri 31-Jan-14 13:32:47

I am becoming a little bit concerned about ds 18 (nearly 19 months) and wanted some opinions. For reference I also have an older child, dd 11 years. I will of course take him to the health visitor too but wanted some real life stories.

Before I start I know absolutely nothing about autism or special needs in general so please accept my apologies if I say anything wrong - I'm doing my best through the realms of Google!

Ds has always been a little bit behind on the milestones and when he had his health visitor check at 1 year she said he was where they expected him to be apart from his social skills - ie he wasn't really babbling or attempting to talk at all and wasn't really interested in playing with toys as such, just turning things over and looking at them etc.

At 19 months now he is very, very active and wants to walk everywhere - his favourite thing is walking to our local shops and back (about a 20 min walk) and he will often stand up at home rather than sit down. He just seems to want to wander about between the living room and the kitchen.

He has one proper word which is "car" and he will say this if he sees a car. There is nothing else however,just lots of random babbling. No mummy or daddy. Is this normal (for want of a better word) or not? He doesn't always seem interested in eye contact, and you have to say his name lots and lots of times to get his attention..His hearing is good however, he enjoys the odd cbeebies programme and will run into the living room from the kitchen if he hears a distant theme tune!!

I'm struggling a bit because taking him to any groups etc is just awful. He has no concept of sitting still for anything and at songtime for example he will shriek and scream to run about so I just let him in the end. He isn't interested in the songs at all or the actions he just wants to pull everything off shelves shelves.

I feel like I'm spoiling the groups for others so I'm on the verge of not going anymore.. I'm not even sure ds cares either way. He doesn't seem interested anyway. His favourite things are tv (which I limit a fair bit), walking and music. He will dance / bum waggle to tunes.

The other main problem I have is that he has no concept of taking a bite of anything. I've weaned him the same way as my dd but basically if I give him a biscuit he will put the entire biscuit into his mouth and try to swallow it whole. So everything has to be broken up into small bites and given one at a time - if I give him 2 or 3 bits he will grab them and put them all in one go. It's quite scary as he's nearly choked a few times so now I just give him the small bits as it's safer for him.

I don't know.. I'm rambling. Maybe it's nothing - just average toddler behaviour? Feeling unsure. I love him so much and just want to encourage him to develop. I don't know how to sad

Sleep is fine - 12 hours at night and 2.5 hour nap.

Thank you in advance for any comments.

Maybe I'm just being silly. ... ?

Fairylea Fri 31-Jan-14 13:34:50

Sorry also meant to add he has tons of toys and I encourage him to play / sit and play with him but he really isn't interested in any of them. He will look at them for a minute and is off wanting to do something else. Same with books etc.....

zzzzz Fri 31-Jan-14 14:12:06

I think not saying "mama" or "dada" is unusual (mine didn't till 3.5/4).
I would self refer to SALT as ths and the swallowing warrant looking at.
I think jumping to autism is premature, but there are lots of conditions tht might impact development this way (including ASD).

I knew ds was different very early on. What that difference was I couldn't have said, but he was days rather than months old.

Ineedmorepatience Fri 31-Jan-14 14:35:02

I agree with zzzzz start with a self referral to speech and language or if your area dont do that ask your HV or Childrens centre about the best way to get a referral.

Toddler groups dont work for lots of people, we preferred our local soft play centre, open all day when the big ones are at school. It was £3.50 for as much running around screaming as any toddler could manage plus tea and toast.

You get to play on the equipment too with your little one. Try toddler groups again later maybe.

Its good to be vigilant with little ones, gut feelings are usually quite good. Start with speech and lang and see what happens from there.

Good luck smile

AttilaTheMeerkat Fri 31-Jan-14 15:05:44

I do not think you are being silly at all and your concerns are valid ones.

Do try the HV by all means however, requesting your GP to refer your son to SALT and a developmental paediatrician may be another route you now want to consider as well.

Let us know how you get on and keep posting on this part of the board.

Geneticsbunny Fri 31-Jan-14 15:27:45

We were told we weren't allowed SALT till DS was 3 even though he had an existing condition associated with speech problems. You might be told the same thing. My DS only had a few words at two but I am pretty sure he could say dada mama and woof ( for dog)

salondon Fri 31-Jan-14 15:47:12

What were the first signs of autism in your child and how old were they?

I started getting worried at about 1 yr old.. But knowing what I know now, the signs were there from about 7 months old.
I would like to add, many kids dont regress till 2.5 and many dont show signs till 2. I dont think there is anything "normal" about the spectrum

I will of course take him to the health visitor - yes do that, however, dont be fobbed off if they send you back saying this is normal.. Ditto for GP.. Do not leave their office till they agree to have a referral sent to the child development center. I was referred at 10 months old.

he wasn't really babbling or attempting to talk at all and wasn't really interested in playing with toys as such, just turning things over and looking at them etc. - this to me is a red flag

He just seems to want to wander about between the living room and the kitchen. - Try and add a purpose to his wandering.. e.g. asking him to help with chores - Could you put x in the room etc

he enjoys the odd cbeebies programme and will run into the living room from the kitchen if he hears a distant theme tune!! - we had this with the BBC news and thus I knew the hearing is fine. Not responding to name isnt "normal".

He isn't interested in the songs at all or the actions he just wants to pull everything off shelves shelves. and he has no concept of taking a bite of anything - Another red flag. Ask for him to be seen by a SLT & OT...

Your boy does have a few things which you can use to intervene - What happens when you stop music.. will he look at you and request?

I would start him on Fish oil also.

If you can, then go private.. Parents here will be able to give you very useful names..

Start sensory integration

Hire an ABA tutor to come and train you, dad and sibling..

I would say start Intervention now.

Write to your local education authority to get a statutory assessment. Do not let them tell you that you cant do that till school. You can.. a 1 week old child can have a statement of special education needs..

Meanwhile, if you can find the time and money you could read books:

Hugs, I found this time utterly difficult. This board and some people who I connected with privately have been a life saver..

zzzzz Fri 31-Jan-14 15:54:33

Salt are more likely to see you sooner if you mention "problems with swallowing", i think this is because they will think it could be "just tongue tie" or more generously because they can help more with those sort of issues.

sammythemummy Fri 31-Jan-14 16:01:05

Echo everything that salondon has said.

My dd met all her milestones, she could say mummy daddy uncle at 18 months, "sing" songs etc she just failed to develop to 2 word sentences at 2 and answering her name was a hit and miss. That's when I took her to the HV

I would get myself on the SALT waiting it's because I've had to wait 8 months to start therapy.

Or buy More than words book (it pretty much tells you what salt do)

salondon Fri 31-Jan-14 16:07:04

oh and video him every few weeks.. That will be the biggest proof

SwayingBranches Fri 31-Jan-14 16:13:24

My ds2 is 27 months and just been referred to the paediatrician for suspected autism. We became concerned about a nebulous "something" wrong about 20 months, but in hindsight, there are things predating that.

Interesting you should say about the food because my son does it and we haven't even thought of connecting the two. We've only just been able to trust him holding a banana because he would just attempt to stuff it all into his mouth. I only ever dared give him penne pasta because of the hole in it!

The M-CHAT is a good way to see if your child might be on the spectrum, this pdf has follow up questions too:


My ds scores 16 and a score of 3 apparently warrants a referral. Still, I kept waiting and looking over it again and again the past three months hoping he would score less.

I only took him to the doctor this week, with the m-chat checklist and things highlighted, and I am so glad I did she was incredibly understanding.

And hugs It's rough.

SwayingBranches Fri 31-Jan-14 16:20:20

Mchat is specifically for toddlers.

Ds likes lift the flap books as it's something to Do.

Ahhhcantthinkofagoodname Fri 31-Jan-14 22:48:06

Hi agree with everything others have said esp about getting referrals to developmental paed and SLT. at that age I was worried my DS couldnt babble or say mama or dada and singing groups were a similar nightmare to you. He was also obsessed with stacking cups and extremely sensitive to noises such as the Hoover, hand dryers, food processors.

We got ASD and verbal dyspraxia diagnoses just after DS 3rd birthay.

Don't let health visitor fob you off, that wasted about 9 months for me and I still feel bitter about it! It is v tough coming to terms with the fact that your child may have some developmental problems but its better for everyone if they are identified ASAP. There is so much excellent support out there. And in lots of cases I'm sure the paed can provide reassurance the child is fine!

Fairylea Sat 01-Feb-14 19:43:21

Thank you very much for all your replies. It seems like a referral to salt is the way to go. To be honest I wasn't particularly impressed by our health visitors so I am relieved to hear that maybe a trip to the gp and go from there might be a better way to go.

I haven't had a chance to do the test yet (mchat) ill try and do that tomorrow.

The video idea is really good. I've already got some videos of him just taken as you would any patent but I might make it a more regular thing so I can show any experts etc.

I'm really interested to hear of your experiences and so much of it rings true sad especially the poster who mentioned about the swallowing too. He can chew and does chew but he just doesn't want to bite a piece off anything. It just literally goes straight into his mouth as it comes however big the piece!

I talked to dh about it. He thinks I am being a bit daft and that there's nothing wrong with ds. He's happy for me to take him to be checked out but he thinks he's just a bit slower to hit his milestones. However this is Dhs first child (dd is mine from a previous relationship) and he also doesn't see ds around other children his age as im the one taking him out so I don't think he necessarily sees what I see. But then again maybe I am overreacting.

I think also perhaps he is scared like I am and doesn't want to admit there might be an issue. sad

I've used some of your ideas about using the music and interrupting tv programmes to get ds attention and that seems to work quite well. Better than calling his name anyway!

It's quite hard to get eye contact with him, he tends to just look through you although sometimes he does lock eyes with you and seems engaged. It's hit and miss. I've been trying to get him to touch my face and look into mirrors etc to spark his interest but he absolutely hates looking into a mirror and will actively try to get away so I've given up now.

Feeling a bit sad and anxious really. Thanks for letting me talk here. I will let you know how we get on.

Fairylea Sat 01-Feb-14 19:43:48

Parent not patent I meant.

salondon Sat 01-Feb-14 20:22:15

Fairy - a lot of what yor describe rings a bell. Pls start the intervention ASAP. Show your husband videos of other kids.

MariaNotChristmas Sun 02-Feb-14 00:05:05

You can crack on with 'intervention' tomorrow.

Pick one 'thing' you think he is 'nearly' ready to get,
choose a suitable bribe,
'help'/assist/manipulate or trick him into doing the 'thing',
give bribe instantly.
Rinse and repeat- ie do the exact same procedure a few times in close succession. With instant bribe every time.

Once he's 'got' it, reduce the 'help' just a teeny bit, but keep bribing
Later on, or the next day, repeat again, & wean the help a little more

If he doesn't 'need' to be taught the skill you've chosen, all you'll have done is accidentally private-tutor-hothouse him a bit. Which no father will object to. Especially if you pick something super-cute and worth boasting about, like putting his own shoes away on the rack (or whatever)

MariaNotChristmas Sun 02-Feb-14 00:07:37

So, responding to name. Maybe be his favourite tune remixed, with his name mixed in to the start of the song?

But he only gets the rest if he comes... and over time, the volume of his name goes up, whilst the opening bars of the song volume goes down...

nappyaddict Mon 03-Mar-14 12:06:12

Have you done the new version of the M Chat called the M-CHAT-R It was updated in December 2013 and is meant to have improved specificity. It can be done from 16-30 months. They say that the earlier the diagnosis and intervention the better. In the USA they say to have a diagnosis by 18 months is ideal. I know children in the UK who have started the assessment process at 17 months so go to the GP now. Don't be fobbed off. If you have a DP take him with you as well, I think it shows them you mean business.

Tell them you want a referral to paediatric neurologist, hearing centre, OT (occupational therapist), SALT (speech and language therapist), PT (physiotherapist), SEYS (specialist early years service) and CAMHS (Child and Adolescent Mental Health Services). It's best to test for and rule as much stuff out as possible. CAMHS and SEYS are both great at dealing with behavioural stuff and can put 1:1 support in place when he goes to playgroup/preschool/nursery.

Try these tests with your son before your GP appointment and write down your results. Print off a copy of the tests and take a copy of your results with you to show the GP. Keep the copy and results to take to your paediatrician appointment when it comes through as well.

If you can, write down all the things you can think of that concern you about him and also how often these things occur. It is easy to forget things once you are in the doctor's appointment. I've thought of some things to get you started, but include any others that you think of as well.

From now on do a diary every day of his behaviour. Take home videos as evidence. Most phones have a basic video function nowadays which can be handy as you can whip it out if you see him doing something that concerns you. Also list what he eats because certain things can affect their behaviour and some children with Autism can have intolerances to dairy, gluten and soya. Write down any tantrums he has or any things he does that you think are a bit "odd" or not something a neurotypical child his age would do. This will help the GP and the consultant see the bigger picture of what he is like rather than the 15 minute snap shop he will get at the appointment.

Eye movements
Eye contact
Food issues - how is he with different textures? Does he like lumpy food?
What is his concentration like?
How long can he focus on activities/games/stories for?
Does he mind food being mixed up or does he like things to be seperated?
Does he like foods with sauce like pasta and sauce, baked beans, spaghetti hoops, pizza etc?
Does he have poor sense of danger?
Does he run off without telling anyone where he is going, run into roads, jump off high things or touch hot things like kettle/oven/fire/hot tap?
Does he do any repetitive behaviours like opening and closing things, turning things on and off, spinning things, stacking or lining things up, watching water etc
Does he have echolalia (parrot talk)?
Does he stare into space/blank out/seem hypnotised?
Does he like the feel of certain things? (DS likes labels, clicking my fingernails with his fingernails, stroking my face/hands/fingers, grabbing my hands/fingers to stroke his face/hands/body)
Does he mouth things?
Does he tip toe walk, flap his arms or do any funny movements or noises especially when excited?
Have you any concerns about delayed speech, physical problems or coordination problems?
What sort of things does he get very upset over?
What's his pretend play like?
Does he use his imagination or act out scenes he has seen other people do or seen on TV?
Does he play and interact with other children?
Does he join in with their play and games or does he copy and play alongside them or completely isolate himself from other children?
Does he get very excited or very distressed by crowded places, loud noises, bright colours, flashing lights etc or does he not really mind either way?
How long can he wait in a queue for without getting distressed?
Does he ask you for things he wants either verbally or with eye contact and gestures?
Does he tell you if he is hungry/thirsty/hot/cold? How?
Does he try to share his interests with you? How?
Would he bring you something over he wanted to show you, point at something he had seen that interested him, look at you and smile when he sees or is doing something that he likes?
Does he ask or look at you to play with him?

My DS was referred by the neurologist for a multidisciplinary assessment. He had 64 hours of assessment over 4 weeks at the children's assessment unit of our local hospital. It was like a small nursery where about 4 children attended all at once. He was assessed by specialist nursery nurses, OT (occupational therapist), PT (physiotherapist), SALT (speech and language therapist) and CP (clinical psychologist - they do the diagnosis). As they have the advantage of having the children in for 4 weeks they use the direct observations of staff over the period of the assessment rather than the individual session used for an ADOS test. They also carried out an observation at home and at nursery so they could get the views of his usual nursery staff and what he is like in the home environment. At the end of the assessment period I had to take part in a parent interview called an ADI-R. I then got the diagnosis in writing about a week after.

Also Dyspraxia can often go hand in hand with Autism. Print off this list and tick the things off which apply to your son and take that with you to the GP and consultant's appointment as well. Symptoms of Dyspraxia

This is a story about the condition called Fragile X that they should test for As you can see this genetic disorder has very similar characteristics to Autism so also needs to be ruled out. Make sure you ask for both the DNA and chromosome test. Take a copy of this with you so you can prove the DNA one is more accurate and that some doctors like to do both tests to be completely sure. Fragile X Testing

I know this is a lot of information, but if the GP and consultant can see you have done your research and know what you are talking about they will be less likely to fob you off.

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