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Misdiagnosed autism?

(65 Posts)
zanyzoo Thu 21-Feb-19 07:36:22

Hi I've posted in SEN with no response

My son is 5 and has just been diagnosed with autism, using an ADOS screening with OT, SLT and paed. I've always suspected as he is very controlling, intense fears, obsessive and has rituals/routines. He also has quite a few sensory issues and he's being referred by his school to have an Dyspraxia assessment.

I've always encouraged him to do things that put him out of his comfort zone, gently of course and things he'd ultimately enjoy. He used to cry and be a lot more anxious, but we've persevered and he's grown in confidence

This week alone I have dropped him at a new swimming course where he knew no one, he's been to a play date at a friends house who he hasn't been to before and he participated confidently in a group I took him to. He has done so well with all of these things I'm thinking has he been misdiagnosed? Is that even possible?

TomSmitten Thu 21-Feb-19 07:42:06

It probably is possible for a child to be misdiagnosed but the things you mention wouldn't necessarily mean he doesn't have autism. My ds was diagnosed at 4.5 with Autism Spectrum disorder level 2 (needing moderate support). He is able to do all those things and has done since he was 5. I'm assuming they interviewed you extensively about his behaviours and social skills before diagnosing? If so, I'd trust the diagnosis.

PeachMelba78 Thu 21-Feb-19 07:45:50

Autism is different in every person. My son has been diagnosed and he acts very differently from other children who have the same diagnosis. In his case he is beautifully behaved with strangers and in 90% of social situations, because he ‘masks’ and then when he gets home he lets his true feelings out. He can often be exhausted from masking, but if he has had a good day and felt quite comfortable then he will be ok at home too.
I doubt that your son has been misdiagnosed, he just presents well socially which is great.

OneInEight Thu 21-Feb-19 07:50:19

Well, yes, it is possible to misdiagnose autism as (in our experience) the assessment is fairly subjective and based a lot on the parent's views.

Now whether or not your son has been misdiagnosed is another matter entirely. When mine are not stressed and on a 1:1 basis they can pass for NT a lot of the time. it is only when they are stressed or in larger groups of people that their difficulties show up more. Strangely, mine can often cope with the massive changes e.g. change of school but the little things like unannounced supply teacher are often the more upsetting for them.

My ds's difficulties also were not really obvious until they were in juniors as most children do not have fantastic social skills at five so then they were really not so far out of the norm whereas at nine they clearly lagged behind their peers in this respect.

Sirzy Thu 21-Feb-19 07:51:02

I think for someone to be diagnosed, especially so young, through the nhs system which is multidisciplinary and in depth it is quite unlikely that the diagnosis is wrong.

I think we forget that like any other child children with autism change as they grow and how they present can change over time.

I think also it’s worth being aware (and I’m not saying that is what is happening here) that sometimes - especially if pushed too much to “conform” they can learn to mask in order to present how they think is expected - which can often lead to explosion further down the line! It’s all a balancing act.

Deadbudgie Thu 21-Feb-19 07:57:13

Entirely possible to be misdiagnosed but it would be possible for anyone here to know. Experts are not infallible.

I guess the question is, do you feel that having a diagnosis is helpful to you? Or is it something you park at the back of your mind and keep doing as you’re doing (which sounds like a fab job) and helping your child develop according to his individual needs not feeling constrained by the dx.

Spikeyball Thu 21-Feb-19 07:57:38

He may be doing well because of all the extra support you have had to give him. It doesn't mean he doesn't have autism.

BishopBrennansArse Thu 21-Feb-19 07:59:25

Nope.
I'm autistic and can be sociable. It's hard work but I can do it. Sometimes I want to be sociable, other times not.

Common misconception that we don't want company.

AfterSchoolWorry Thu 21-Feb-19 07:59:27

It's possible for autistic people to 'mask' for set amounts of time.

AlphaNumericalSequence Thu 21-Feb-19 08:04:31

My son has a diagnosis of autism too, and I always wonder if the diagnosis is correct, or whether it is meaningful given the multiplicity of differences within autism.

The more I try to understand autism, the more I don't understand it.

I think the solution for me is to regard the diagnosis as a tool for supporting my son, rather than as a characterisation of him. It unlocks some degree of professional support; and it allows him and his family to frame his difficulties in a way that doesn't involve judgement, self-blame, etc.

For me, diagnosis doesn't successfully say "this is how he is"; it says "these are the things that might help".

I'm so glad to hear of your son's recent social confidence and enjoyment.

BeautyFromTheBlock Thu 21-Feb-19 08:07:55

Sounds like your supportive, confidence building parenting is working - well done.
It can be very hard.
Did he fall apart later about something totally unconnected?

Ncaa Thu 21-Feb-19 08:12:10

There's always a chance, but I have asd and sometimes I have months, to be honest even years, where I feel quite confident and seem completely "normal". It can also go the other way to, the last couple of years has been a serious dip for me. So that alone wouldn't necessarily mean no autism.

YouSayPotatoesISayVodka Thu 21-Feb-19 08:14:21

I don’t think your child has necessarily been misdiagnosed. My son has ASD and ADHD and sometimes has great days or weeks or whatever. Great as in: engaging in class, no friendship issues at school, minimal meltdowns and just generally a joy to be around.

The following day or week he’s the exact opposite for no apparent reason. And generally his behaviour (for want of a better word) has improved with time anyway probably due to changing the way we (at home and school) do things if that makes sense.

4point2fleet Thu 21-Feb-19 08:19:33

The implication (here) behind 'masking' is that the individual is hating the situation really, but holding it together for the sake of looking 'normal' and will probably let the tension go in a negative way further down the line.

However, it is also quite possible for an individual to build personal skills strategies that enable them to genuinely be comfortable in situations that look like they 'should' be challenging. This, surely, is something to aspire to so that an individual is happy and can cope well in a greater range of situations?

Well done OP, for supporting your DS to learn to manage his anxieties so he can access his community.

Itscoldouthere Thu 21-Feb-19 08:32:08

zanyzoo I’m just wondering why you are hoping he’s been misdiagnosed ?
I ask in the nicest possible way, is it because of fear and not knowing what it means for you and your DS, just wanting him to be the same as everyone else?
He could have been misdiagnosed but as others have said, it’s not just one person making the DX.
Speaking from experience (my DS had a DX at 6) I would suggest you get some support with finding out what this DX means. I went on a course run by the NAS, it really was very helpful and supportive, what you need to realise is you need to be the advocate for you DS if things get difficult and to do that you need to understand and be accepting of his condition.
He’s only 5 and has so much ahead of him and you are the person who is going to help him along that road, you need to be informed and engaged in the process.

Banjax Thu 21-Feb-19 08:35:13

I dunno OP, he sounds like my son who has a robust attitude when he has to but lets it all hang out at home.....

ALSO it does peak and trough, my son is far less noticeably autistic than he was but there are times (like this week - no school - less routine) when he can revert to his old ways.

You're doing a great job if youre challenging him and his rigid thinking!

Kleinzeit Thu 21-Feb-19 09:40:14

Hm, it's hard to say. My DS could often behave surprisingly well in new situations but he couldn't keep it going. So he'd be fine at first (and everyone including me would wonder if the experts were wrong...) but after a few days or weeks - usually at about the time when I started thinking "hey this is really working for him" and I stopped worrying wink - he'd have a blow-up.

Over time I decided to take advantage of that breathing space at the start of new things, but not to load DS up with many new things at once, and also to make plans in a way that left me with space for things to go a bit wonky later on. So if he seemed to be doing very well at a new activity I wouldn't assume I could always use that time to do something else - if I could, great, but I would still need to be "on call".

flowers

Kleinzeit Thu 21-Feb-19 16:35:06

The implication (here) behind 'masking' is that the individual is hating the situation really, but holding it together for the sake of looking 'normal' and will probably let the tension go in a negative way further down the line.

For us "masking" was not about hating the situation it was more about managing demand. My DS often sought out situations he couldn't cope with. He couldn't judge. He could start out enjoying himself and having a whale of a time, then it would get too much for him (sometimes with no warning) and all hell would break loose. Or he would hold it together perfectly while he was engrossed in something new and challenging, but that left him with no resources for coping with ordinary life afterwards. He could be fantastic in a new situation and then a nightmare at home for days afterwards.

So I do think it's possible to over-challenge children on the assumption that this is just building up their strategies for coping. Which it might be, but at a cost. It's a difficult balance and it's not always obvious what's the best thing to do.

zanyzoo Thu 21-Feb-19 18:05:37

Feeling very emotional reading all of this, since posting we have had quite a tricky day. A lot of my sons behaviours when he isn't coping come out as hyperactivity, loud noises and high energy. Also meltdowns but these are really lessening as time goes on. What a previous poster said really resonated with me - it's been exhausting for me to get him to this point and a lot of hard work on my part. I myself have always struggled socially but no one knows the incredible effort I have to put in, because I look so natural. Have also had some extreme low points in my life regarding anxiety. I guess I was hoping it was wrong because I don't want him to feel that anxiety and have to mask so much and also because I'm aware this will possibly get worse as he gets older and harder for him to mask? Harder for him to not feel the anxiety. It's still early days with the diagnosis and I need to get a lot more support, you're all right, thank you so much.

Itscoldouthere Thu 21-Feb-19 18:54:04

zanyzoo it is an emotional rollercoaster and hard to sometimes stay strong, but you can and you will.
I hope to make you less anxious by suggesting seeking more information and support for yourself, my DS is now 18 and we have come so far, he is a million miles away from my worst fears.
I think I was lucky as he had a very well funded statement of special educational needs (it’s called something else now) so lots of support at school and I had support from CAMHS, classes with other parents, I really changed the way I treated my DS and we became a much calmer household.
His needs really changed as he got older and we needed less and less support.
My DS now needs very little support and doesn’t offen every tell anyone about his DX it’s his choice, he will hopefully be going to university in September and is a very happy teenager, sometimes I think he’s happier than some other teenagers as he doesn’t seem to care what other think of him and he’s not seeking others approval, he’s quirky but no more than many other nerdy teenagers.

zanyzoo Thu 21-Feb-19 20:33:45

@Itscoldouthere thank you so much for that perspective, you should be so proud of yourself because your son sounds like a credit to you! This is the other thing I'm not sure about - my son is very self aware and gets very upset when people laugh at him, often thinks people are laughing at him when they're not, or misunderstands why they're laughing, one paed told me before that this self awareness can be a sign it's not autism!? I don't know I just feel like there's so many variables, so much information out there. But either way he definitely views the world differently and has trouble with social communication, plus anxiety and much more. The same paed did tell me that the things I do for him are how they'd recommend treating a child with autism, it is exhausting isn't it!

Nathansmommy1 Thu 21-Feb-19 20:38:30

With the ados test they have to score a certain mark in a number of categories to warrant an asd diagnosis, so having seen the high cut off points in the range of categories with my own child, I would think a misdiagnosis would be rare.

Kleinzeit Thu 21-Feb-19 20:39:19

You are doing a great job. There is so much more understanding and help for ASCs available now than there was when we were kids, with your support your DS has every chance of leading a happy successful life, ASC or not. And don't forget to look after yourself too flowers

Allfednonedead Thu 21-Feb-19 20:55:27

It sounds like you and your DS are doing amazingly!
My DS(8) was diagnosed at 6. When I mentioned to his teacher a year earlier that we were wondering about ASD, she was surprised and politely dismissive. When I told his Y2 teacher we were just waiting for an assessment (about 2 weeks into the term) she said ‘that makes sense’.
What I’m trying to say is that it can seem like a bit of a rollercoaster - sometimes he’s fine and other times it feels like he’ll never cope with the world.
I think for me it helped to remember it’s a developmental disorder. That means you can expect him sometimes to lag behind his peers, socially or emotionally. Then either he catches up or learns the skills that have come to them naturally.
Since his diagnosis, I’ve gone down that pathway myself and am just awaiting the final feedback from my own assessment. People keep saying it must help that I know what he’s going through, but sometimes that’s a problem too.
For example when he doesn’t want to go to school, all I can remember is how much I hated school and I never found good strategies to improve that. It sounds like there might be a bit of that going on for you - you say you struggle socially, and don’t want that for him.
I try hard to separate my issues from DS’s, and to look for other sources of support if I’m not able to offer it.
As for the torture of having to mask - I don’t think he will have to. Having a diagnosis and loving support from you should mean that he learns insight, skills and boundaries, so he can not just cope, but get the best out of things. That’s different from masking, which is pretending you’re normal in order not to be picked on by the conformers.
Sorry that’s a bit long - please ignore any bits that don’t help or don’t resonate.

zzzzz Thu 21-Feb-19 21:01:20

Message withdrawn at poster's request.

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