Autism - Am I Being Paranoid?

[Hedger]

I am pretty convinced by 18 month old DS has ASD. My concerns are that he has never pointed, has no joint attention (e.g. has never brought us a toy to show us), doesn't have very good eye contact, has no words, doesn't understand anything we say (other than "no"), etc.

We took him to see a NHS developmental paediatrician the other day and she refused to refer him to the autism team, saying she thinks he just has a delay in speech and understanding.

I asked why she thought it wasn't autism and she said because the children she saw with autism "ran around the room screaming", had tantrums and had problems with sleeping and food. She also said DS is clearly very attached to me and DH (which is true) and she thought he did have some non-verbal communication (this was based on the fact that he tried to take a toy from her, she kept hold of it trying to get him to ask for it, he gave up and turned away and started crying (during none of this time did he look at her at all) - apparently this is communication of sorts )?

Is it just me or is this a very ignorant view of autism for a developmental paediatrician to have? I know that a lot of children with autism do very obviously have autism in terms of stims, screaming, having tantrums, not sleeping and having problems with food, etc. but surely that is not at all part of the diagnostic criteria?

It was the sort of thing my know-it-all MiL says - "oh he can't have autism because he gave me a hug this morning" - but I really expected a bit more from a developmental paediatrician?

Does anyone have any thoughts? Am I right to not trust this doctor's verdict or am I being unreasonable? We are going to see Daphne Keen next week (privately) so it will be interesting to see what she says in comparison.

My DD is nothing like the children she describes.

She is happy and easy going and loves food.

I am a bit disturbed a paed would say that too.

My ds1 virtually needs needed a cattle-prod just to get him to walk anywhere. Running around the room screaming wasn't typical behaviour for him.

Those are bizarre reasons to rule out ASD.

Thanks for replying Fanjo, yes, me too!

DS has always slept well, eats very well, rarely has tantrums (or if he does they just last 5 seconds or so) and in pretty much all respects is a very "easy" child but I don't think this in any way rules out autism.

It's frustrating because my worries keep getting brushed off by family (particularly MiL) who don't want to believe anything is wrong but I really expected better from a developmental paediatrician!

I didn't push it because I knew I was seeing Daphne Keen next week but I'll definitely get in touch with her again if Daphne thinks there is cause for concern.

Thanks Polter and copper top, good to know it's not just me!

Dd is fairly easy going but has no joint attention or play skills and obviously language severely affected.

She doesnt run around screaming or have huge sensitivities.

A consultant neurologist told us once that she sisnt have autism as she "had facial expressions"

My ds didn't do any running or screaming and actually engaged with the tasks the community paed set. The conclusion was a working diagnosis of classic autism, referral to the MDA Team and Autism Outreach.

My dds isn't do any running or screaming either. And was (and is!) very attached to me (and other family), has slept a minimum of 12 hours a night since she was 12 weeks old, and at time of diagnosis/being in the system ate like a horse, with a varied diet.

She was dx'd at 2.6 with severe autism, having been in the system since she was 16 months old.

Thanks, all. I'm going to wait to see Daphne Keen and then get back in touch with the NHS paediatrician. Bit worrying that these very outdated views of autism are still present in some doctors.

The NHS developmental paed my DS saw was rubbish. I don't set much store by them to be honest. They're trying to avoid dx a lot of the time. Not that I'm bitter or anything!

Yes I wondered if that might be it - if they're so overloaded they want to try and avoid a diagnosis until children are a bit older when it is a bit more certain.

Obviously I don't know your DS but I'd exercise caution

Children can change enormously over a year so paediatricians often don't want to jump to conclusions. However if your very concerned you have the right to ask for a second opinion. If you can contact a local autism group and ask the parents which community paediatrician has an interest in autism and asked for a second opinion from her.
You can also ask to be referred to speech therapy as they would be the main service involved for both speech delay and autism.
Good luck.

DD actually has quite a few "classic" ASD traits. I was told by an educational psychologist who assessed her in reception class one year prior to diagnosis that she can't be on the spectrum as she doesn't mind walking a different way home from school.

'Children can change enormously over a year so paediatricians often don't want to jump to conclusions.'

No paediatricians should be jumping to conclusions. They should be qualified and trained enough to not have to. The average age of diagnosis in the US and Canada is around 14 months which is when intervention starts. 3x their early intervention budget is spent on care for those children when they are adults. I the UK it is 10x because services are so crap in the early years.

When I went to the doctor for the referral I took the m-chat checklist with me and she sent it along with the referral letter.

This is a pdf with follow up questions to help clarify : M-CHAT

As you can see, not pointing by this age is a critical skill. I never used to know it was so important and when I did it was like I was noticing it everywhere, such young children do pointing! I am shocked a child development paediatrician wouldn't know this

My ds is incredibly attached to us and his big brother. He is a very loving and friendly child. He's recently started signing "friend" at every small child that passes him! He's started saying hi to other children, tho mostly they're not even looking at him....! Our paediatrician saw this lovely, friendly, sunny, smiley, well behaved, playing happily child. Except his play was not appropriate, it was solitary, with no effort to show or involve us as parents. (and he had a massive meltdown when she wanted to see his cafe au lait spots but this wasn't a deciding factor!)

ds is still undergoing diagnosis though has been referred for things as though it's autism as mostly she thinks it is but wants to rule out other things. But in this short time I've been reading about it all and watching videos etc I've learnt a whole lot about what exactly communication is and how early it begins.

We did get a referral to speech and language therapy which is something I suppose (although the sessions seem to be very few and far between so I think again we'll have to go private). But i agree that more needs to be done early on. I was reading today that the cost to the state of looking after one autistic person for their lifetime is over £3m, and if the key years are before they are three (as I believe they are) it really seems a false economy to be holding back on treatment until they are older.

Very interesting to hear other people have had similar experiences. I'll report back one I've seen DK next Friday.

Yes, it's amazing how ill-informed some paediatricians seem to be about it! It's one of the few medical things that is so easy for laypeople to understand - because diagnosis is based purely on behaviours - so how come trained doctors aren't getting it right?! Worrying.

Hedger my DTS2 is 17 months old and sounds very similar to your son and I'll be watching this thread with interest. I have suspected autism since my DS was 12 months. He has reasonable eye contact but he does run around screaming. A LOT. It's quite disturbing to watch along with his tantrums.

We're currently dealing with his glue ear but as soon as that's done I am getting him referred to the community paediatrician again (he wouldn't see him at 12 months as it was inappropriate).

Good luck with your appointment.

Hi everyone, just to follow up on this - we had our appointment with Daphne Keen yesterday and she confirmed DS does have ASD. She said she was sure and that his problems were "significant". Which makes it even more shocking the NHS paediatrician said he didn't have it!

deadwitchproject - Best of luck with your DS. I too thought something was wrong at 12 months and by 15 months I was pretty convinced. How is his non-verbal communication? Does he point or bring you toys, etc? That (joint attention/shared interest) seems to be a real key at this age. I think the thing I would say having gone through DS's diagnosis is not to let anyone fob you off - I think if mothers think something is wrong, they are usually right. Feel free to message me if I can be of any help or if you just want a chat.

Just wanted to say that a I'm sorry about the diagnosis. Who woukdn't prefer to find out they were crap parents instead eh?

Good luck with the next steps and congratulations for being so on the ball. Your children are lucky.

Yes this is dumb - but could be too early to get diagnosis too. My Pead also refused assessment rereferral at that age but my (asd) dd was too delayed generally to decide autism was the reason at that stage. She is also flexible, attached and affectionate - but in a way that's different iyswim

Hello Hedger, just wanted to wish you well. At least now you know for sure.
And well done for being so on the ball. I am ashamed to say that I knew nothing about ASD apart from Rainman and the sterotype of a little boy sitting rocking in a corner. I have two children. We knew our oldest was a boy at a scan. I can't explain why - there is no history in our families- but I had such a fear and dread that he would have autism. It was clear early on that he didn't, and I can remember saying to DH that I was so relieved that he didn't have ASD, and felt foolish for having worried about it so much.
Total hubris for me. I had in fact been worried about the wrong child. DD was born two years later. She was an angel baby; smiley, happy and affectionate. I knew she was delayed in speech, but I thought everything else was fine and that her language would catch up. She got dx of ASD two months before her 4th birthday.
Looking back, I can't see how I failed to spot the signs,and it is ironic that I had been living with a child with the condition I had previously dreaded and feared, without even realising it. The reality of life with an autistic child is so different than what I had feared it would be. There are some occasions when things have been hard, but we have a lovely life .

Your DS is lucky to have you. You have maybe come across this already, but the Hanen book "More than Words" is a great resource for helping with communcication early on.
deadwitchproject all the best for your appointment for your DS

Thanks for your very kind comments everyone!

marchduck - Yep I have heard of that book and will defo get a copy of it. And thanks for telling me about your positive story - good to hear you have a lovely life .

Hedger I'm sorry to hear the diagnosis has been confirmed. I imagine though, it must be a relief to know your instincts were correct all along. Now you can get on with all the various treatments/therapies to help him.

We have a full hearing test (ABR I think?) in the next few weeks. I've been told that if he isn't able to comply then it will need to be redone under sedation at which point they may remove his adenoids and tonsils (he has mild sleep apnoea). He has pointed ONCE. I was lying on the floor and he pointed down towards my face when I asked him "where's Mama?" I think it was a total fluke and he was probably going for my nose. He never brings me toys or anything which could be construed as shared interest. He claps v v occasionally and never waves. He is like a tornado in the home, rushing and crashing around everywhere. My sister says he's a little Damian (demonic little boy in The Omen!)

I think his glue ear has cleared now and am pretty sure the hearing test will reveal his hearing is OK. I can't wait to get it over and done with and move on with things. Thanks for sharing your experience, I will definitely be calling on you soon.

marchduck, thank you.