Toddler - autism concerns

[LittleMissSnowShine]

Hi all,

My DS is 27 months and for a while now I've been getting a bit concerned about whether her might have autism or ASD. I work with teenagers, a few of whom are affected by Aspergers and autism, so I feel like I have a pretty good handle on recognising the symptoms displayed by older children / young people but it's a very different ball game with a toddler!

He is very sociable, he can meet your eye, he tolerates cuddles (tho he will only actively seek out a hug maybe once a day for about 10 seconds) and, in a way, he interacts quite well with other kids when he's out and about, with my friends kids or at his childminders. So far, so good.

However, he doesn't talk. He has a vocabulary of maybe up to 50 words but he only uses a handful of them and he doesn't even use those consistently and he never strings words together into a sentence. The health visitor saw him last month and she has referred him to a speech therapist and also to have his hearing checked because he had some issues around glue ear last year. DS also doesn't really communicate as such - if you ask him to do something a lot of the time he just kind of ignores you, so it's hard to say whether he's ignoring you because he doesn't want to do it or because he genuinely doesn't understand. His temper tantrums are ferocious, even being used to working with teenagers with very challenging behavioural issues I am often afraid to take DS out of the house on my own because it is exhausting, there's always a screaming match and it's just very hard to handle because he's big for his age and very strong and he kicks, smacks and screams the place down. He doesn't do a lot of imaginative or role play, a bit with his toy cars where he makes car sounds and says beep beep. He also gets OBSESSED with things, like watching videos on my phone and literally wants to do the same thing for hours and hours on end, going crazy if you try and distract him from it or get him to do something else

He's a really bright kid and understands how everything works, it's very hard to pull the wool over his eyes and he really loves music and books. He's a really funny, sweet little thing about half the time, a normal toddler some of the time and an uncontrollable frustrated seething mini monster the rest of the time. Normal (tho highly spirited?) toddler or should I be concerned? What (if any) should my next step be?

[redwellybluewelly]

My DD is 28months, she is non verbal except for a handful of words which she uses infrequently. BUT. She is not ASD based on her willingness to attempt to communicate, she uses signs and points, does your DS role-play or pretend play? What are his favourite activities? Is he in a preschool/nursery setting? Ours has been superb at getting in other help (DD has some need for occupational therapy). You mention your DS is communicative, so how does he communicate? Our nursery has won awards for their language work and they currently have no concerns about DD, we are in the system for other reasons and in our area if you turn down a therapist once you do not get access again for a good while hence why we have seen SaLT once.

Something I did want to mention is that portage does not have to be after a dx, you can self refer in our area for them to do an assessment. It really does vary but they were the best thing that happened to us and to DD.

I hope you get the referrals you need promptly, you may get more comments if you post in the Special Needs Children topic.

[LittleMissSnowShine]

SALT appt went ok, she red flagged a couple of the same concerns I have had before I had even mentioned them to her. DS is going back in 3 weeks for a more formal assessment and she has mentioned the possibility of referring him to developmental pediatrician if things continue.

Because DS is only 27 months it's still possible his language skills are just a bit delayed - there are encouraging signs that they are developing but there do seem to be some links missing, where he finds it hard to grasp verbs and more abstract concepts and he rarely initiates any kind of conversation. SALT is hoping with fortnightly sessions with her and work at home with me, the missing links may start developing and the situation may resolve, but if in 8 weeks or so there seems to be limited or very slow progress then it might be a good idea for DS to see someone who can look into the possibility that the communication issue might be tied to ASD.

In a way it's hard to hear someone articulate what I have been quietly worrying about, but the overall picture seems fairly positive at this stage and at least SALT seems pretty professional and proactive. One thing I would ask - do fortnightly sessions seem often enough to you ladies who have already been down this route? Should I be thinking about paying for extra private sessions so DS can go weekly?

[LittleMissSnowShine]

Thanks very much for the recommendations - def going to give these books a try and I didn't know about ICAN so I'll check this stuff up tomorrow. At least SALT appt is this week so we're getting the ball rolling - he's a funny wee thing, v communicative, engaged and on the ball in some ways and in a complete world of his own and difficult to reach in others. Hope we're able to help him communicate with us better to make life easier for us all - you;ve all been so helpful so thanks again

[cestlavielife]

ring ICAN and NAS and see what programmes are running locally eg early bird programmes etc- depending what runs locally you might be better of with a "maybe ASd" diagnosis or a "maybe speech abnd language delay" initial diagnosis. play the system. fine out what help in groups is available.

get his ears check soon as poss as that could impact.
it is about play sckills more than anything.

things like joint attention.

if you sat next to him reading a book to him and you close your eyes but continue to say what is on the page - does he notice and say wake up or nudge you or does he not notice at all?
try it

[Catsdontcare]

Can I recommend the book "It takes two to talk" it's not cheap about £35 but is a really good practical resource. It's cheapest from Winslow Press I think.

[LittleMissSnowShine]

Luckily our appt with nhs SALT is next week so its only taken about 4 weeks. I'll see how it goes but if I'm not hugely impressed might think about a private one - I got DS a sookie & finn dvd but cant say i've noticed much of an improvement...

I think based on everyone's advice / experience that I will make an appt with GP next week too and flag up our concerns because, as you point out, even if she tefers him to paedatrician the appt prob wont be for a few months so its good to get the ball rolling. Thanks everyone

[saintlyjimjams]

We had a private SALT as well (and have continued to on and off).

Our first NHS one told us she wouldn't do any therapy with ds1 as 'he isn't capable of anything is he?'

Luckily he has a school SALT now, who doesn't write all the kids off without even trying to communicate with them.

[Catsdontcare]

We've been seeing an independant salt for some time now and the nhs salt had the nerve to act shocked and say that they wouldn't dream of doing such intense therapy with a child (30 mins once a week) and that they wouldn't consider therapy til he was 4 and even then it is better done in a large group so he doesn't know he was being helped

[Clarabumps]

If you have concerns go to the doctor and ask for a referral. If you wait for Salt you can be waiting forever. Your son sounds very much like my little boy but with more speech. At 27 months ds said about 10 words and never really tried to communicate with us. He has just started nursery and we are now just getting a referral process on the go but it's been a REALLY long wait. I had concerns from around a year and a half.. told the hv who put it down to 2nd child syndrome.
He has autistic tendencies however we have no official dx yet. Its best to start the wheels in motion should you need it a year down the line. Don't take no for and answer as you are his mother and if you feel there is something wrong then push for the help.
i'm not saying at all that your wee boy has autistic tendencies however if you feel you need something investigated then go for it and do not be fobbed off by well meaning health professionals. Unfortunately autism is rarely cut and dried especially if it is mild.
Feel free to pm me if you want to discuss this further. I have been where you are and its horrible. Thoughts constantly whirling around and around.
xx

[lottytheladybird]

My DS is 29 months old. When he was 26 months old, we went to our GP with our concerns (doesn't do protodeclarative pointing, doesn't wave, lack of eye contact,...), who then referred us to the community paediatrician. It was about 2 months before we got that appointment. The community paediatrician has now referred DS to the specialist team of paediatricians at our local hospital - we are still waiting for this appointment.

In the meantime, we got our DS a private speech & language therapist (we've been referred, but our appointment with the nhs speech & language therapist isn't till Jan!) and Portage (you have to be referred to get support from Portage, which is an organisation who helps children with extra needs) is now working with our DS, too.

I think if you have concerns, then there is no harm by going and having a chat with your GP about your DS. If he does have an ASD, then I believe the sooner you can implement early intervention the better.

[LittleMissSnowShine]

Hmm thanks for preparing me to what we can expect from SALT, i think i might wait til after appt next week and then go see gp week after so I can tell her i've been to SALT but dont feel confident that this route is hitting the nail on the head.

Also, visual timetable sounds like a good idea for round the house, mite make one at the weekend :)

[saintlyjimjams]

ah a communication programme. Yes we had a succession of those. The more complex the child, the more likely you are to get no hands on SALT, but a piece of paper instead.

[Catsdontcare]

Tbh I think our nhs salt made the referral to distract me from the fact that they wouldn't be offering ds any help. Got a lovely a4 sheet of 'tips' though so that should bring him up to speed nicely.

[saintlyjimjams]

I wouldn't wait to see the SALT because they're not allowed to dx, so you can get some very wishy washy advice.

I'd ask for a referral to a paed (GP or HV) - the waits can be long, but you can always cancel if you don't need the appointment.

[Catsdontcare]

Initially it was a referral to paediatrician who then referred onto child development centre where we had a two day assessment with multiple professionals.

[dorapeppageorgenoddy]

If I were you I'd wait to see the speech therapist if you are not happy with what she/he advises than at that stage I would go to the doc - at this stage 27months it is very hard to get real answers if like you say your observations are not a clear indication than Health Professionals may want to watch and wait - this can be frustrating for parents but often good for the child as things can change and at 27 months a lot can change between now and 3;

As you know with your older children you work with the children with obvious traits are obvious but there are many children with autistic traits who may be on the spectrum of autism but to different degrees and at just over 2 although early intervention is good for anything, you want to give your baby time to develop -

Try and eliminate frustration for you both by finding visual timetables/images to show what's next; a picture of your son doing doing lots of different activities in his normal routine and then you can put Velcro on the back of them and put them in order to show the plan of the day -

Anyway rambling now....

[LittleMissSnowShine]

Where do you get referred to cats? I imagine when speech therapist meets DS (esp if he's feeling a bit cranky) they probably will give us a referral but I just don't really know who you get referred to, what happens next, if it's a good route to go down etc...

[Catsdontcare]

You could go to the gp and ask for a referral, I think it was hv who did ours and then we saw the speech therapist who also made a referral. We also had his hearing tested at the hospital which was good as eliminated that as a problem. Also the audiologist noted some of ds's behaviours in her report which again helped back up our referral.

[LittleMissSnowShine]

Cats - Yes, it was the speech thing that led me to contact health visitor to see if DS could have a review appointment so he's seeing speech therapist next week but I just wonder what (if anything) might be causing his speech to be delayed.

saintly / dora - Thank you, I tried this test: www.autismspeaks.org/what-autism/diagnosis/screen-your-child

And we got a score of 6, which is apparently, indicative of an elevated risk of developing autism/asd.

Should I wait to see what speech therapist thinks next week or press ahead and make an appointment to see the GP? Not really sure what to do for the best, but I am finding him pretty exhausting at the minute and I also want to be doing the best I can for DS, with supporting him and helping him to communicate

[Catsdontcare]

It's always hard to know from these posts if there is cause for concern, but I think if you are worried then it is always the right thing to seek professional advice.

In my own experience it was only ds's speech delay that started us on the path to diagnosis for asd. I'm sure as he got older I would have noticed other things but initially it was just his speech that had me worried.

[dorapeppageorgenoddy]

www.paains.org.uk/Autism/chat.htm

[dorapeppageorgenoddy]

www.paains.org.uk/Autism/chat.htm

This link has the early screening test for toddlers;

[saintlyjimjams]

Sorry farking phone

Also have a look at the special needs section here - you'll get more traffic.

[saintlyjimjams]

Does he point? How does he tell you he wants something.

There's a website with videos of typical and autistic development. I can't link as I'm on the phone but if you google first signs autism you should find it.

Also have a l