anyone had an older child diagnosed ASD after being told they weren't when younger?

(10 Posts)
hyperhypermum Sun 22-May-16 08:38:47

DS was finally assessed for ASD age 7 after years of us suspecting things weren't right. He had sensory issues, obsessive OCD type behaviour and a mild speech delay. He was also very behind at school. We were told he did not meet the criteria for ASD but had mild sensory processing issues. He was also later diagnosed with dyslexia. For the next few years things were mostly fine. He has friends but they tend to be the quiet, quirky, non-footballing boys (like him!). He doesn't like (and never has) parties and big social groups but is fine on an individual basis. We just accepted this was his character and stopped worrying.

However, since he started High School things have gone very wrong. His anxiety has gone through the roof, his OCD is very evident and he panics if his routine is disrupted. He has made no friends (still has the old ones but they're not in his class) and his peers pick on him because he is different.

We're waiting for a referral to CAHMS for his anxiety but am now wondering if they could have been wrong about him not having ASD. Individually and with people he knows well he does not appear autistic at all, whereas in large groups he sticks out like a sore thumb due to his lack of engagement.

OP’s posts: |
Ineedmorepatience Sun 22-May-16 10:07:35

I think its probably quite common to be honest! Secondary school is a stumbling block for many undiagnosed children, and some diagnosed ones too!

I would be pushing for another assessment! Keep a diary of all the things he struggles with, what triggers him to struggle and how you deal with it while you wait for your appointment! You could request a social communication assessment from speech and language while you wait too.

Good luck flowers

Bogburglar99 Sun 22-May-16 10:13:37

Im not sure but would certainly be very interested to know! We have a similar story with 10yo DS although high school is a joy yet to come. Told age 8 not ASD (although scored above threshold on ADOS and always has). Also has acute anxiety and OCD. Things going very pear shaped in Y5. We accepted 'not ASD' but asked for a private assessment in relation to PDA with a very experienced child psychologist and speech therapist. Who has reported back that she isn't sure about PDA but feels he clearly has high functioning autism and she can't imagine how CAMHS missed it.

So it can be a little complex ... grin and I would certainly suggest it is worth re raising the subject and seeking a second opinion.

hyperhypermum Sun 22-May-16 12:11:11

Thanks. Whether he has ASD or not he certainly has issues that need addressing. He never got as far as ADOS. We and school had to fill in questionnaires. We then spent around 2 hours with a paediatrician who asked us loads of questions, chatted to DS and watched him play. She did things like got him to build something out of Lego which she then destroyed. He was mildly disappointed, then laughed and said something like "awwww". Apparently an autistic child would've kicked off regardless of the fact she was a virtual stranger. DS reacted appropriately. She concluded that he didn't meet the criteria for ASD so no further assessment necessary. She recommended he see OT re his sensory issues and the EP for suspected dyslexia. The EP who assessed him also commented that he showed no signs of autism and engaged well with her. Other people who have worked with him since have said the same.

Until recently I've not thought he could be autistic after all. I do know several autistic kids. They're all completely different, some are considerably more social than DS in group situations, but the one thing they have in common is a tendancy to say odd or inappropriate things. DS never does this and engages well one on one. I just wonder if he's just shy as I was exactly the same at this age and am definitely not autistic.

OP’s posts: |
bedelia Sun 22-May-16 23:52:13

Yes, DS1 was very recently diagnosed with autism at the age of 19. When he was 7/8 he was referred to the CDC due to various issues (learning difficulties, sensory and physical problems, social anxieties, etc). AFAIK, autism was never mentioned, nor did I bring it up. He was discharged with no diagnosis, though was assessed for dyslexia, dyspraxia and other conditions. The paid explained that he had a "spikey profile" but as he did not score high enough in any particular area he could not be diagnosed.

For reference, back then I had no internet access. DS1 was my PFB and there were other issues which could have potentially explained/masked his odd behaviours. It was only when the issue was raised about DS2 (who is more "obviously" autistic, iykwim?) that the penny dropped and I finally began to understand why DS1 had struggled so much.

DS1 does not have/never had meltdowns. At least not of the type DS2 has! Instead, he implodes inwardly (which has led to anxiety and depression, also which triggered his reluctant GP to refer him for assessment).

In your position, I'd really try to understand the diagnostic criteria to see if DS fits the profile, and if so try to gather evidence and examples to support it which could help CAHMS take you more seriously.

coffeemachine Mon 23-May-16 07:26:58

not us but I know in my local SN support a number of families with DC where this happened. I don't think it is uncommon tbh.

willitbe Mon 23-May-16 13:54:13

It does seem common that ASD can be picked up later despite there being concerns earlier.

My ds I knew something was different when he was a baby, there were classic signs all along, but it was always managed by the family and school. High intelligence meant that creative ways around the issues masked the issue. When he is with adults, it is not very clear, as he can make eye contact and communicate ok with them, but with his peers it is much more obvious. All the sensory issues, hand-flapping, anxiety are generally well hidden in public, and come out when at home, after holding them all in all day at school.

Age 9 we got a diagnosis but for ADHD and dyslexia, but in the reports (that I only got to see this week!!!!) it said that he should be assessed for ASD when the medications for ADHD had been tried. We were told to our face that he can't have ASD as "he makes good eye contact".

We finally got a formal diagnosis of ASD this year age 12. And that was only after we pushed it with CAMHs. Having it confirmed has enabled many supports to be accessed.

If your instinct says it might be, then push to have a formal assessment.

Verbena37 Tue 24-May-16 09:21:04

Not quote the same for us as we didn't even consider ASD and so hadn't had him assessed but since weaning, I've just treated all of his little ways individually whereas, if I'd looked at them as a whole, would probably have had DS assessed way before now.

His diagnosis before Christmas was of high functioning ASD with sensory processing issues and demand avoidance traits.

Having the dx is much better as we are accessing support from the school he will be attending in year 7 and also I can access local county council ASD support workshops etc.

From the things you are saying, I would ask for another assessment and explain that ASD type behaviours are now much more evident as he has got older.

ParanoidGynodroid Tue 24-May-16 10:11:27

My DD was assessed (with ADOS) at around age 5, and we were told she was not autistic She was diagnosed with a speech and language disorder. A few years later, things were getting very difficult, so she was reassessed. After this we were told that she didn't quite meet the autism criteria, but because of the strength of some of her traits was given a diagnosis of atypical autism.
I have known several autistic children and, as you have noticed yourself OP, they can be very different indeed. Some engaging well socially. I've heard that it is fairly well acknowledged now that the tests are a little rigid and outdated, and don't allow for the full spectrum of different presentations of ASD. Certainly, as we found, they are not geared towards diagnosing girls, who present differently.

When you do see CAMHS, OP, do express your concerns and request that your DS be reassessed. It may well open the gates to a lot more help and support for him.
Good luck.

tartanterror Wed 25-May-16 22:25:50

Age 3.5 we paid to see a private paed about our concerns about DS. We were roundly patronised and told that there was absolutely no sign of a social and communication disorder. We were happy to hear that but realised it seemed a bit optimistic as it was only based on a very short chat :/ Those paed comments raised a few eyebrows with the different professionals reviewing his file around age 7.5 when he was diagnosed by an NHS Paed/SALT team with ASD. No formal questionnaires used - rather observations done in a couple of different settings including school. School were adamant that there was no problem as he does well academically and interacts with other children, but their observations were too basic to pick up his difficulties. They simply decided that he was naughty! Anyway plenty people were happy to tell us that it couldn't possibly be ASD, while two different SALTs almost badgered us to have an assessment. If you think that there is an issue keep pressing until you find someone who will consider everything properly. Good luck

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