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No one believes DS's dx!

(75 Posts)

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Sahkoora Tue 27-Aug-13 09:03:48

DS was diagnosed two weeks ago with autism. We had been expecting a diagnosis of ADHD with possible mild ASD, but he scored so highly on the ADOS test that the paediatrician said she thinks the autism is the cause of all his behaviours.

But every time I've told anyone, friends and family, I've had complete disbelief. Responses have ranged from "They can't diagnose that, they only saw him for an hour" (my mum) to "he's not autistic, I've worked with autistic children and he's not one." (a friend). "That's just boys" (my mum's friend), the usual "they over-diagnose autism these days" and "something bad must have happened to him to bring it all on"

My mum even told me I don't deserve the DLA I've been awarded, she said my sister (who is a single mum) deserves 10x that much.

I think the problem is that DS is highly verbal and a clever boy. The outward signs of his autism are quite subtle most of the time, but his sensory needs are quite high. All summer, I've been under pressure from my mum to take DS places that I know he will find difficult: parks, town, play centres. I have obviously explained about the meltdowns that result from a sensory overload, and my mum has seen them for herself, but she is insistent that we must "get him used to it". At the moment, DS has just turned 5 and he just doesn't understand that there is anything wrong with him and is impossible to reason with, so I am just trying to help him stay calm by avoiding triggers.

My mum has very kindly been taking an afternoon a week off so she can take us somewhere during the summer holiday, and this has turned it into a battle. DS is so much better off in quiet places like the woods, as he loves nature and the outdoors and I don't have to watch him so closely as he has no sense of danger, particularly during meltdowns. He can wander a bit ahead, for instance, which he couldn't do in town.

My mum and I have ended up having a semi-argument every week. She is nagging and nagging me because she wants us to take DS to Butlins in the school holidays. My stepdad has come into some money and wants to take us all away. Again, really kind of her, which is why I feel so awful. But she won't consider anywhere quieter, and thinks DS will be fine because she'll be there. She's even started to talk to him about it behind my back, making him excited etc. I have said no every time it's been raised, but she just won't let it go.

But all this has started to make me doubt it too. Is an ADOS test infallible? DS is completely unable to cope at school and I think the teachers and other professionals working with us have suspected autism, though no one has said so outright.

Is it possible to have scored highly on an ADOS and for no one to believe you are autistic? Is it just ignorance?

I'm so sorry, this is much longer than I intended it to be! But TIA for reading and any responses.

FanjoForTheMammaries Tue 27-Aug-13 09:21:00

Sounds like your mum is in denial, which is remarkably common in grandparents and is very hard to go through.

Just stand firm.

It usually is the case that DXes aren't as obvious when children are still little but they are as they get older, and it will be beneficial to him in terms of support and understanding at school, so don't question it too hard just now, I think.

FanjoForTheMammaries Tue 27-Aug-13 09:22:09

And I don't think his behaviours do sound that mild from all the difficulties you say he has in different places, to be totally honest, it's just that you are used to them.

FanjoForTheMammaries Tue 27-Aug-13 09:22:41

Put it this way re denial..my DD has SEVERE autism, and PIL still tells me he can't see much wrong with her (she is nearly 7 and non verbal/in nappies).

mummytime Tue 27-Aug-13 09:26:34

Your son sounds Autistic to me!

It is just he is quite good at covering it up. And you are very good at predicting triggers and avoiding them.

Yes you might want to occasionally try a trip to the play park, with a lot of preparation and a quick escape route. But I would want to try such "experiments" alone or only with another adult who "gets" it that we need to be prepared to leave vEry quickly. I would also want to pick the play park very carefully.
With Butlins, I would discuss exactly how crowded and noisy it would be, and how he feels about noise. Discuss his triggers with him, does he dislike touch? Smells? Noise? Not being able to get away?

You could also try taking your Mum to a very noisey bar or into places like Hollisters, and then talk about how hard they are to cope with. Then explain your DS has such sensitive senses he feels like that in much quieter places.

I took my DH to see "The Curious Incident of the Dog in the Nighttime" recently, and I think it has helped him understand our young relative with Asperger's far more.

magso Tue 27-Aug-13 09:30:45

I think it is quite common for family ( grandparents in particular) to disbelieve an autism diagnosis, especially at first, and in the very young. It's something to do with wanting the best for their much loved family member, hoping the professionals are wrong, and wanting to be supportive. Also I think the older generation think of autism as profoundly disabling with no communication, - and in our children see delightful interaction and character and fast development that is quite different to their idea of ASD, so cannot square it.
I cannot comment on the ados- although it is highly respected and the gold standard. Ds who has LD was dxed without an ados so I have no experience.

sophj100 Tue 27-Aug-13 09:47:55

My mother struggled at first, being in her 70's their generation wasn't aware of ASD and being such an 'invisible' condition, they are often quick to pooh pooh that there is any such thing. Both my boys, aged 4 and 6 have ASD and being quite high-functioning, I am often questioned as to it being correct. Very frustrating.

Even close friends, although aware of the diagnosis, still question its validity and I think misunderstand just how hard it is and because they are both quite handsome boys and sociable, it's still just thought of as being 'naughty' or plain badly behaved.

I agree - 'The Curious Incident of the dog in the night time' is a fantastic book to read and even recommended by the SALT specialist.

It took a fortnight's holiday, with my mother, for her to see all the difficulties they face, the meltdowns etc., and now she is super-supportive! smile

FriskyHenderson Tue 27-Aug-13 09:49:04

We have had the same. School are relatively disbelieving, as are some friends. In particularly some very good friends of 20+ years, he is a teacher and has taught ASD kids so knows all about it. We have always managed DS around them, avoiding situations as much as possible. He can cope with a weekend visit(with a lot of ppreparation and coping strategy) but is guaranteed to lose it on the way home. Which of course they don't see.

We haven't told grandparents, they don't see much of them and it wouldn't be worth the hand wringing and bollocks talking.

sophj100 Tue 27-Aug-13 09:50:31

PS: The myth that autistic children are all non-verbal loners with the 'slack-jaw' is a stereotype that people have fixed in their minds. Most people are not aware of the Spectrum of abilities and how far-ranging they are. x

FanjoForTheMammaries Tue 27-Aug-13 10:16:49

I am not too keen on splitting children into HFA and "non verbal loners with the slack jaw" tbh.

My DD is non verbal and is not a loner and does not have a slack jaw.

Sorry to detract from thread.

FanjoForTheMammaries Tue 27-Aug-13 10:17:37

she also has "delightful interaction and character" and is very sociable, despite having severe ASD

zzzzz Tue 27-Aug-13 10:43:22

Yes, sorry to sound touchy but "non-verbal slack jaw" hurts. Would you be interested to know that the non-verbal and unusual looking can be just as able and loveable as the more average looking child.

Back to OP
I think the problem really is that your Mum doesn't understand what the dx means. One of the reasons there are more children dx with autism, is that what used to be dismissed as "a bit odd/geeky/socially inept" is increasingly being recognised as the result of the same differences that cause more overt autism. So we can use the same techniques to help and stop blaming the child/parents/trauma. The same is true of many other disorders dyslexia/glue ear/asthma etc. if she is reader Send In the Idiots, and Emergence are both good. If not utube Temple Grandin (who has an ASD herself and is very focused.

sophj100 Tue 27-Aug-13 21:09:52

This is NOT my description but one that was made TO me, when I explained my boys had ASD. Shocking yes and very hurtful, to suggest they didn't believe me, as this is how Autism SHOULD look like to the few ignorant people out there.

I am trying to illustrate not only the shocking language used but the myths people have that they should all look / act a certain way. Also that people disbelieve you, if your children don't fit into that stereotypical image they think they should.

zzzzz Tue 27-Aug-13 21:18:48

I understand that soph but you must see how offensive it is that you feel the real horror is that people might perceive your child to fall into that "category" (for want of a better word) of children with ASD as apose to the nice "verbal and handsome" set?

How verbal you are isn't even part of the criteria in the states and jaw slackness never has been.

Rather than trying to distance yourself/your child fom more severely (or perhaps overtly?) effected individuals, I think it is better to focus on explaining what the dx of ASD actually means.

FanjoForTheMammaries Tue 27-Aug-13 21:22:24

Hear hear

sophj100 Tue 27-Aug-13 21:51:35

You are misunderstanding me completely - my horror is that they didn't believe me and the reason was because they didn't look like they should look (according to their perception). Really hurtful to be attacked now, when I am sharing an experience I have had and also rely on this site for support and should be able to share. I do not distance myself or my children from severely effected individuals, I have many friends whose children are also on the spectrum and are in varying degrees of ability / disability and I have nothing but admiration for them and all of us for surviving the daily battles we face.

My youngest is always being stared at but not for any visual differences but because of the way he acts and sometimes I wish they did have more visual references to their condition, so as to be believed.

I am new to this site and I thought the point was to be able to share ones hopes, fears, experiences and I do not separate myself as being any more or less fortunate than anyone else. We all post on here for help, advice and support as well as to offer it. I am now extremely hurt that you have clearly misunderstood me and, despite my explanation, continue to attack. Be a little more supportive, please as it's unfair that I have to now apologise for relating a story in my life, simply because you didn't like reading it. It wasn't nice to hear what this lady said to me, only because it highlighted how little awareness there is out there and I am a mother of 2 children with ASD and you seem to want to attack me, purely because I explained that my children don't look like they have a disability, and that is just as frustrating and hurtful to hear, because they do.

zzzzz Tue 27-Aug-13 22:02:36

I'm sorry you feel I'm "attacking" you. shock. I'm not sure you are understanding my posts?

I'm not sure whether trying again is going to be perceived as aggression?

sophj100 Tue 27-Aug-13 22:18:53

Not at all. I came to this site for support and solidarity. I did understand your post, you think I am offended & horrified (your words) that my 'handsome', sociable boys are put into the category of ASD. How can I be? They are in this category. I am only horrified and offended that this woman questioned who they were, because it didn't fit into what her expectation of it should look like! We were in a playground, not in a medical environment, so even more shocking.

The whole point of this thread was about not being believed, hence my input.

PS. They are handsome - because I'm their mother. They are verbal - but weren't always. They are sociable - but they are not always successful.

zzzzz Tue 27-Aug-13 23:49:17

I really don't want a slanging match. I was responding to,

Add message | Report | Message poster sophj100 Tue 27-Aug-13 09:50:31
PS: The myth that autistic children are all non-verbal loners with the 'slack-jaw' is a stereotype that people have fixed in their minds. Most people are not aware of the Spectrum of abilities and how far-ranging they are. x

My point was that the phrasing was horrid (particularly if it is your child who could be characterised in this way) and that the emphasis would be better placed on understanding what the diagnostic criteria for autism is (ie not dependent on jaw or being non-verbal) rather than the breadth of presentation.

As I said in my previous post I'm sorry if you feel I was attacking you. I did find the above post difficult and felt I should say so. I hope it's ok to say that?

FanjoForTheMammaries Wed 28-Aug-13 02:15:26

Zzzz wasn't attacking you or overreacting.

Your post did sound derogatory to those children with more severe ASD to me as well.

Doesn't mean you can't share your experiences ir get support here, just that maybe you should avoid contrasting your handsome verbal children with the " slack jawed non verbal stereotype".

FanjoForTheMammaries Wed 28-Aug-13 02:18:11

Saying "most people are not aware of the spectrum of abilities" DID imply that you think your children are at one end and kids at the other are the hideous stereotype.

InSpaceNooneCanHearYouScream Wed 28-Aug-13 07:45:13

For what it's worth Soph I realise what you meant and understood you are not bring derogatory to kids with severe autism, you were simply explaining other people's misconceptions.

InSpaceNooneCanHearYouScream Wed 28-Aug-13 07:46:21

* being not bring ffs

FanjoForTheMammaries Wed 28-Aug-13 07:47:57

Yes..she was explaining that..but also there is a distinction in her own mind between the ends of the spectrum.

hazeyjane Wed 28-Aug-13 08:04:13

I must admit the 'slack-jaw' reference made my stomach lurch a bit, especially as ds is 'slack-jawed' due to his low muscle tone.

Anyhoo, to the op - my ds isn't autistic, but we have still had that questioning of his sn by relatives and good friends - despite severe delays and multiple physical issues, I think it is sometimes their way of misguidedly trying to make you feel better ('oh all children do that') and sometimes it is just that they don't see all that is different in your lives.

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