Very anxious about autism signs in ds

[Wwwomble]

This is going to be long, sorry. I would really like some guidance and, if any can be given, reassurance.

Ds is nearly 12 months old and I am as certain as I can be that he has autism. I know it is very early to tell, but there are too many red flags to be coincidental. These include:

He doesn't follow a gaze or point.
He doesn't point or reach out (unless it is to get something he actually thinks he can reach).
He doesn't wave, nod or any other gestures.
He started a little babbling in the last month but certainly nothing resembling words.
He has no stranger anxiety.
He makes some eye contact, but it is short lived (not when feeding for example).
He has always disliked being cuddled.
He vary rarely imitates (has occasionally clapped or banged table when we do).
He doesn't refer back to me- he can play on his own for 15 minutes or so without looking at me.
He only rarely answers his name.
He doesn't look at me when I go to get him from his cot.
He likes it when I hide things but would not play peekaboo.

On a positive note;
Physically he's fine- crawling, cruising etc
He smile as a lot at strangers, who always comment how happy he is.
He will sometimes interact.
He reaches to be picked up, but only when I am standing over him.
He's very interested in the world.

Basically I'm scared. I don't know what to do. The health visitor said to wait and see, by everything I read says early intervention is crucial. But we can't honestly afford all that. I don't even think the uk is up to a diagnosis at this age, let alone support.

It's going to be severe, isn't it? I don't know how we will cope with that, I honestly don't. And I'm pregnant with another, and although it was much wanted I'm now seriously considering talking to dh about an abortion, as this baby is likely to suffer too.

Can anyone help with where to go from here?

i think its worth taking signs seriously, but dont overreact. Autism is not a death sentance, and your son might not even have it, but if he does, he can still have a wonderful fulfilling life and it doesnt mean that any subsequent children would have it either. Most people I know with an autistic child, their other children are neurotypical x

and it sounds like if he does have ASD, he sounds like hes very interested in the world, so he wont be like your cousin.

Thankyou. Im sounding like a stuck record but I am honestly grateful to everyone who has taken the time to respond. I appreciate that I'm not the only one for whom this is an emotive and personal issue.

My DS didn't point, clap hands at this age. He does have ASD. I thought he would be 'severe' but he's not. He's 12 now. He's in mainstream school. He has friends, he can swim, he's in cross country club, he's in hockey club, he's a brown belt in karate, he can swim, he acted a role in a Shakespeare's play at school, he's very talented at golf and he's also talented at art. He passed his SATS exams. His educational pysh said he is 'phenomenally bright'I never thought he would achieve half of what he has done when he was young. I also have a DD who isn't affected. Please, please, try to be calm, many toddlers have some autistic traits. It does not mean they have ASD. Even IF it is, it is not the end of the world.

I'm very glad I started this thread. I know my knowledge of autism is limited and I have a warped perspective. It's been really helpful to hear more positive accounts. Thanks.

Well 3 months on and although there have been behavioural developments I'm still sure he has asd. Last week he started pointing, either with one finger or whole hand, which is great,but only to get what he wants, and without and referencing back at all.
Actually, his eye contact is worsening if anything. I notice the differences with others his age, and younger, increasingly.
We bought more than words, and are trying to implement the elements that we can, although the idea of teaching him anything seems completely beyond the scope of how he interacts, somehow.
Anyway, I want to start going down the line of diagnosis now. Would anyone be able torecommend a specialist somewhere in the south midlands sort of area? Thanks

I'm not sure why I'm updating this. Possibly for my own records, possibly because when searching for answers no threads ever seem to have a conclusion. Possibly I just need to vent my concerns. I don't expect anyone to read or be interested in the exact details of my sons life!

So, at 16 months it's like this. We decided against a private diagnosis. Frankly, we are going to need all the money we can get to actually help him, and quite likely his sibling too. We have been waiting for a Salt appointment for 3 months, and have a gp appointment next week where we will show his mchat and push for a gp referral.

He can point, although with 2 fingers or thumb. He will point at something he wants, and look back at us. Will sometimes grunt when he does this, if we push for more.

He will point with his thumb to things in books, and to things that interest him, but will never look back at us. It is like it's for his benefit not ours.

He still doesn't imititate anything. He makes no speech or animal sounds, although does babble more and make a da sound when he points sometimes. I think his receptive speech is very poor too, as he doesn't understand commands. Also, he will sometimes point to something we name, but I think he is mainly guessing, as he is just as likely to point to something else.

He often will answer to his name, and momentarily glance up, but nothing more. He certainly wouldn't come when called.

He doesn't smile or make eye contact when we pick him up from nursery or get him from his cot. Oddly, he will start pointing so it's not as though he doesn't want to engage, he just doesn't do it right!

Last month he waved for a few weeks. Although st objects not people. He doesn't any more.

He gives us toys. A lot. But doesn't show them to us or look when he does it.

Lots of tantrums. Probably just a toddler thing but many more than friends children seem to have.

Certain noises make him scream horribly. Hoover, hairdryer, drill etc. And he makes a weird groaning noise a lot of the time. This seems to happen particularly when he is trying to settle or when he is trying to zone out of a situation he finds too busy (toddler groups particularly).

We are trying some basic Makaton but so far without any results. Equally, trying to implement more than words techniques, it imbot sure we are getting anywhere.

I'm sorry you are finding it difficult to get help. Hopefully your GP appointment will help you to progress. Have you heard of Intensive Interaction? This is a technique for developing interaction and social communication skills which I have found very helpful in my work teaching in special schools. You can buy a DVD and it is not a difficult technique to learn. Makaton I've found very useful for receptive understanding- I don't know many children with ASD who choose it as their primary means of expressive communication. So if he's not doing the signs back it doesn't mean it isn't helpful.
The communication method I find most valuable is PECS - if you get a diagnosis it might be worth looking into this. It's a 2 day training course. I've seen it work well with almost all children who have tried it.

Thankyou blue. I will look into intensive interaction. I was rather hoping to avoid having to go down the pecs route- it seems a bit of an admission of defeat somehow. I know that makes no sense.

Well. 20 months now.

Unsurprisingly, I'm still sure he has autism. As he gets older I can see how More than Words applies to him. His attempts at communication are very much for his own agenda...

He has no words, but babbles with emphasis when he wants something, although doesn't mix consonants.

He hand leads and places items in our hands when he wants an action performing. We try to encourage eye contact with this.

His concentration is very poor. He runs around between toys or household objects generally causing mayhem.

A couple of months ago we were able to get him to imitate actions by saying 'do this' and then offering a food reward. It was exciting, as he'd never imitated for its own sake before. He quickly stopped cooperating and hasn't done it since.

On a positive note it seems that may have kick started imitation a little, as he will now shake his head for no (or sometimes yes), and occasionally nod his upper body for yes. So progress. He will also blow on food to cool it, and a couple of other gestures.

He will do basic role play, but it seems very rigid, and not imaginative play.

I think his understanding may be ok- but as he will only do something if he wants to, it is very difficult to tell!

3 months ago we saw the gp, who took us seriously. After some chasing, we have a paediatrician appointment next month, although we have been declined a multidisciplinary team or development paediatrician at this time.

Nhs salt was largely pointless. She didn't seem to understand the significance of points were raising to do with joint attention etc, and sent us away with some incredibly basic tips that I'm pretty sure most parents follow anyway.

We saw a private salt. It was nice to speak to someone who understood what we were saying. She recommended PECS, as expected, so we will have some sessions and see how that goes.

I suspect a diagnosis is a long way off still, but we have now started telling friends and family that he has autism, which is making it easier to deal with, in a way. But I can't pretend it doesn't make me extremely sad when I spend time with friends toddlers and babies who are so much more developed and interactive than he is. It's heartbreaking to be ignored at nursery pick up, or when I get him out of bed. But I'm making myself cry again, so that will do for now!

sorry OP you are having all these worries. Good that you have been referred though and you really seem to be on the ball.

However, autism is not easy to diagnose and it usually takes a specialised multidisciplinary team to diagnose. I really think you are getting ahead of yourself by telling others that your DS has autism.

Yes, I phrased that wrong. I should have said we tell them that we believe, or suspect autism, not that he has been diagnosed. I wasn't really expecting everyone to read that far

Hi Wwomble, I just wanted to thank you for updating the thread. Our DD is waiting for an assessment and it's so useful to hear other's experiences. As you say a lot of threads get stranded at one point in time whereas obtaining a diagnosis is such a drawn out process. I hope they can give you some more support even if it takes time to get to a diagnosis.

Op..: I strongly recommend you visiting the TEACH ME TO TALK website. When DS was much younger, I didn't find the NHS speech therapist helpful. Viewing this website, made a lot of sense of skills I should be working on for DS.

Lighttripper- I hope your dd's assessment gives you the answers you're looking for.

Notgivingin- thankyou. I'm taking a look now.

It’s been a while... ds is now about 27 months old. We are still on the long road to a diagnosis, going nowhere fast. It is very odd how the various professionals we meet seem to say anything they can to avoid saying “autism”, even though when pushed several have now agreed that it where all this is going.

But, he is doing really well. He took to PECS and it seemed to make something click. We stopped it after a couple of months and his speech has really taken off and is now at the slow end of normal, which is amazing. The content is a bit odd obviously- he doesn’t ask questions and certainly doesn’t converse, and weirdly doesn’t know to shout for attention, but it really is brilliant and he’s a much happier boy.

His play has moved on- he does now line stuff up, and does a lot of sorting and gathering of toys, but he will interact with us a lot more. Everything is still on his terms, though we are working to try and introduce turn taking. His imaginative play is rather limited and repetitive, but exceptionally cute.

He doesn’t interact with other kids his age. It’s quite sad, because he tries, but doesn’t seem to know how. Unless they want to chase him or watch him hide he can’t play!

It’s still very early to know how he will progress, and there are ways he’s growing further apart from his peers, but he’s doing better than I could have hoped this time last year.

Unfortunately it looks very much like ds2 will be in the same boat. He’s a very different boy- far happier and less stressful, but he is already delayed in so many ways, and missing all sorts of milestones. (10 months old and doesn’t roll, crawl, wave, imitate, point, reach to be picked up etc). Im avoiding the professionals this time round though. I know they won’t refer yet and I really can’t face the repeated assumptions that I am just a paranoid mother.

As before, not sure why I’m updating, but hopefully a bit more positive, even if just because we no longer expect ‘normal’. And because other people can finally see what I see, which makes me feel less like I’m repeatedly head butting a wall with my head in a bucket!

well, dd my so called Nt child was a little like that too. If onlly I had raised concerns earlier. we are now on a two year waiting list for assessment.

you will always get someone who blames the parent. for being paranoid, or not disciplining, or letting htem rule over the family.. or any number of things...

Oh yes, always blame the parent! I have been called both a helicopter parent and physically distant in our ASC journey... honestly I think these judgements tell you more about the judger than the judgee (that's not how it feels at the time though!)

Thanks for the update. It seems a long time since I last posted on here. The whole idea was very new and shocking to me then. Like you, we're much more comfortable with and adjusted to the whole idea now. Still waiting for the formal assessment. Still looks like she will get a diagnosis but we'll see. We are doing lots of turn taking. I was watching a Temple Grandin interview last night and interestingly she said that turn taking was key in her view, and it is something you can practice. I also have a DS2 and when he was little I did worry he might be on the spectrum too (he did a lot of that finger flicking stuff and was late to respond to his name). Now I think probably NT but I'm still not sure. But he seems generally very happy and interacts with us so I'm not too worried either way.

Do you think DS2 could be hypermobile? DD was very late to all her physical milestones because of hypermobility. But I wouldn't say (so far) she is at all "severe" in the way ASC affects her more generally, and she has also always been a very happy chilled out soul 99% of the time. And in fact from what I read when she was little a lot of hypermobile kids can present as if they are on the spectrum even if they're not as they struggle physically to interact with the world, so withdraw into themselves more and satisfy themselves with things they can easily reach, etc.

Glad (sort of) that it’s not just me who gets those comments from the professionals!

We have wondered about hypermobility for ds2, lighttripper. We actually had him seen by a physio (we went private- quicker and less judgemental), who said there’s nothing physically wrong with him except for a bit of low muscle tone in his trunk, and his refusal to do things is cognitive. Good news in a way, but obviously the picture it’s building up isn’t great. We will keep an eye on it though.

I think what you say about to the new normal is spot on, but it’s a tough pill to swallow at the outset.

I’d try not to over worry, enjoying your baby and feeling calm with him will greatly help his development, particularly if it does turn out to be anything.

Then at 18 months start listing any words and understanding. Check the online mchat and if there are still areas of concern. Bring the findings to your GP.

www.autismspeaks.org/what-autism/diagnosis/mchat

Oops. Sorry didn’t read update.

You’ve caught him early so that’s brilliant. My son is 5 now. That your son has imaginative play even now is great. My son didn’t until one year ago.

If it helps, some of the things that have really helped is:
Turn taking.
Joint attention.

Using very simple language.
Loads of physical play.
Being really in the ball about him, charts, lists, nipping behaviours in the bud!
Having a laugh. Not being afraid to try new things. But respecting my son’s pace of learning and not expecting too much too soon.

Just looking at your post again Wwwomble I suspect that is very much where DD was in terms of social stuff at 27 months (she used to run up to other children at the playground and smile at them but had no idea what to do next... she would occasionally manage games where she would run and stand next to another child and then run away again, and sometimes they would reciprocate, which she enjoyed, but it was all pretty random). She had imaginary play but there were a few things (a stick being a magic wand, or pretending to be a hairdresser and washing hair) that would get repeated a lot.

I would say her imaginary play is now (at 3.11) is very good (her teachers tell me at least age appropriate), and she also has a few little friends and interacts much more with her peers at pre-school (previously she would only really interact/play with adults). From what other people say she is still "different" (I don't notice!!) but she is happy and I am feeling optimistic that she can even have a nice social life with a bit of support. Just need to keep a real eagle eye out for bullying as she gets older I think (but then I was bullied too and have lovely friends now).

Anyway, my only point is a lot can change from 27 months and it seems like he actually has some good skills for that age that he can really build on? For DD asking for stuff was also far behind her other language skills but she can definitely do it now (still tends to get frustrated before asking for help, but we're getting there!) It's also amazing how often I worry about something being ASC related and then find out other NT kids her age are doing exactly the same thing...

Thanks banana. I think you’re right that catching bad behaviours early will be important. We’ve spent a long time encouraging interaction and sometimes I think he’s allowed to rule the roost a bit much. Always difficult to know where the autism ends and cheeky toddler begins! Not sure he’s understand charts yet- will bear it in mind for the future though.

Glad to hear your dd is doing so well lighttripper. You must be so proud of her when you see her with her friends. She does sound as if she was a lot like ds1 at his age (although he favours hammers to wands and mending things to hairdressing. Nothing like an early bit of gender stereotyping!). Yes- he’s got loads of good skills too. It feels like he has to be taught lots of things that come naturally to other kids but we’re lucky that he is able to learn and seems to pick things up. Either that or we’ve wasted a lot of time, money and effort over the last year and he’d be exactly the same if we’d just let him play. Who knows.