No one believes DS's dx!

[Sahkoora]

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.

[Salbertina]

Probably already been said but yep, v common for many/most around you to disbelieve and blame your parenting basically.

I've variously been told that i "wanted a diagnosis to hold onto" ( from a highly educated friend with dc same age) to "its not from our side of the family" (mil) to "teachers' excuse for poor teaching" from df, an ex-teacher etc etc. its heartbreaking and lonely but utterly predictable,sadly.

[inappropriatelyemployed]

I think, based on talking to researchers in this field and my own experience, that there is massive misunderstanding about the nature of the spectrum generally which doesn't help understanding.

The terms 'high' or 'low' functioning don't help as they are meaningless in terms of understanding someone's needs. They are usually applied, not to function at all, but to those with an intellectual impairment. Yet, intellectual impairment is not part of the diagnostic process and won't describe capabilities in respect of socialisation etc.

So stereotypes across the spectrum are not helpful.

It can be more helpful to think in terms of specific impairments like a graphic equaliser than a continuum - e.g. good cognitive ability, but poor memory and high anxiety and no desire to be sociable. Or non-verbal, but intelligent and can communicate in other ways and expresses desire to be sociable.

So maybe focus on breaking down what is easy and what is hard for your son individually if the terms themselves mean very little to your mum.

Of course, it goes without saying that 'handsomeness' or 'slack jawness' or any other appearance based description are entirely meaningless!

[bochead]

Tony Attwood's book on Aspies is VERY helpful in explaining the multiple permutations at the higher end of the spectrum. You can give her some literature.

Being firm sometimes and saying "Noone is questioning that you LOVE my child, but in order to HELP him you need to accept that he's going to need support in ways your other grandchildren won't over the years. As his Granny you have a unique and very special role to play in his life if you want to HELP him. He's different.

If you don't, then I'm sorry but he has enough hurdles to overcome without your undermining the attempts by myself and the professionals to do so. Perhaps it would be better if you kept your distance in order to allow me to focus on helping a child who needs my 100% emotional attention on him?".

My mother is in her late 70's and adores the TV sitcoms "Big Bang Theory" & one in the middle of the day about some village GP who is a fantastic doctor that can't stand the sight of blood and has zero social skills but the kindest heart you can imagine. Both contain non-NT main characters who aren't underachievers.

My Mum sees DS as different, rather than disabled in the horrid stereotypical sense of the word. As she sees it - does it really matter if he needs things explained differently or more often than his peers? Does it really matter if he learns to read, (insert ride a bike, play team games or whatever is bugging you right now) five years later than his peers so long as he gets there in the end?

She had the same attitude with my sibling, whom to everyone's surprise including my Mum's eventually got a degree. For years Mum's focus was just ensuring she could read and write by the time she hit school leaving age, when she was entered for exams you'd have thought Martians had landed, so excited were my parents and those therapists who'd known her at 5. (At that time noone thought she'd ever do anything but spend her adulthood in some sort of residential care).

It ONLY matters to her when people try to write him off and say he'll NEVER learn X, and she does all she can to ensure that doesn't happen! (Including kick my A^% when the system gets too much for me.)*As an ex-teacher she saw the so-called gifted child wind up in adult life in menial roles, and some of the "SN kids" do pretty well by the time they were 30. A lot of that has to do with how hard their families supported them during their childhoods - a tip she's never been afraid to share.

Denial doesn't help. If he's not ready for Butlins at 5, then he's not ready. Say no, but suggest a country cottage as a compromise. It's not child friendly if the child finds it hell on earth is it? She's not his parent, you are, and you need to have faith you know what's best for him.

[TimidLivid]

I think she should have said that people have said the offensive line to her before she used it but I get that she was trying to illustrate what the disbelievers s were saying. they are basically saying he doesn't look autistic. when we know that some look unusual and some don't but we are all in the same boat really.
and op it is crap when people act like the diagnosis isn't real, they will never get it. as they haven't lived it. it took my in laws to actually have my son staying with them for three months last year to finally get it and he was thirteen. they thought we were get anxious and overprotective until they lived it.
The same with my buggy and rein obsession for my 3 yr old, lots of he doesn't really need those does he, then after spending whole days with my friends and family can see ds2 has issues. But hv and some drs think I am making it up about ds2. so all you can do it know your own experience and ignore the people who don't get it. you know don't you that butlins will probably go badly, its all about noisy entertainment communal play areas , crowds. you know your son stick to what you know and let your mum enjoy her bubble

[hazeyjane]

I don't think it is fair to say that zzzzz was the one to bring up negative connotations.

I also took the post to mean,

There is a myth that all autistic children are non verbal, slack jawed loners, many people believe this to be true, because they are unaware of the wide spectrum of abilities that comes under the umbrella term ASD

Obviously the implication of the above sentence, is that to be slack jawed or a loner or non verbal, are negative things, which is the thing that I found hurtful.

Soph didn't make it clear in her original post that this was actually something that was said to her wrt her dcs.

[tacal]

op - I can relate to everything you are saying. I havent spoken to my mum since I got ds's dx because I am not able to deal with her telling me she does not believe it. I think what zzzzz is saying is correct, people just dont know what autism is.

(I have also had the same problem with arranging holidays. It makes life soooooo hard when families dont understand)

[Randonnc]

I suppose it just goes to show that 10 people can read the same words and interpret them in 10 different ways... very true..

[Randonnc]

But that's it, she didn't say anything about it, whether negative or positive, she simply suggested that it was hurtful to her not being believed that her dc can have autism because they do not fit that description. It was actually zzzzz who implied that Soph was describing it negatively.

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?

[hazeyjane]

So the lady in the park said, 'he can't be autistic, he isn't a non verbal loner, with the slack-jaw'?

It might have been better then if Soph had said that in the first place.

[Awomansworth]

My nieces MIL has a nephew with very severe ASD, he is 18 and in a residential placement. He is still non verbal and will need 24 hour care and support for the rest of his life.

My ds (ASD) is verbal, in mainstream albeit with support. However most people who come into contact with ds know within a few minutes that he is not NT.

Last weekend we were at a tea party at nieces MIL's house and she just couldn't seem to grasp that ds has ASD because her only reference was her nephew. She wasn't in anyway rude BTW.

I read soph post in a similar way. The phrase that the lady used was very offensive and probably borne from ignorance, but soph was just stating what the lady in the park had said.

I certainly didn't read it as her saying she saw that in a negative way at all, merely explaining that the lady didn't believe her dc had ASD, because they didn't fit with this lady's stereotype.

I also felt from reading soph post later was that she felt genuine horror that what she had written could have been taken in any other way.

I suppose it just goes to show that 10 people can read the same words and interpret them in 10 different ways.

[hazeyjane]

she made it sound as though being the 'non verbal....slack-jaw' was the worst thing you could be, when actually if your child is non verbal and has a slack jaw, that is a fairly upsetting implication. It is a bit like someone using, 'drooling mouth breather' (yes I have heard that used) as an insult, or autistic, as in 'that is so autistic'. It implies a negativity to a disability that is insulting and unnecessary.

Personally, not a mountain out of a molehill.

[Randonnc]

Nobody is taking away anybody's right to take offence at what is absolutely a hideous phrase, but it is not fair to take it out on Soph as I don't think she was implying it as a negative stereotype, but I can see it can be inferred that is the case, but I don't think thats what she was trying to do.

For the record, I also have a nonverbal child with Severe Autism.

[Weller]

The only thing I would add is that as a parent of a non verbal child I have a right to be offended by the words even when no intent to offend was made. I have never heard that expression before and when I googled it this thread was brought up which I find sad.

[Randonnc]

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

The statement above simply implies that people refuse to believe her when they hear about her dc's dx because her dc do not fit the image in the peoples head which is of a 'non verbal loners with the slack eyed jaw'. Nowhere has she implied that it is a 'negative stereotype', she has simply suggested that this is a myth and supposedly 'NT looking' children can have ASD etc.. simple.

making mountains out of a molehill much...

[hazeyjane]

Sorry am I misunderstanding, was the 'non verbal, loners with the 'slack-jaw'' a direct quote of something that was said to you Soph, because that is not the way that post came across.

[sammythemummy]

haze I can see why someone would perhaps interpret it like that but I honestly do not believe soph meant it in that way or holds those views.
Anywho, soph has explained the misunderstanding so I dont see why people are still debating what she meant :s

OP, i think you should let your mum take your ds out on her own and let her see for herself.

[RowanMumsnet]

Hello

We can see tempers are running high on this thread, but do please remember to stick to the Talk Guidelines.

Thanks

[fanjoforthemammaries7850]

[fanjoforthemammaries7850]

No you totally hadnt. That's the whole point.

Hopefully you have now and may give it a rest