To be irritated by F&F reactions to autism diagnosis

[notanothercrapusername]

Hi there,

My almost 4 year old DD was diagnosed (clinically diagnosed) with autism a few weeks ago. I've long suspected she had it, just because of some funny quirks but her issues became apparent when she started preschool a year ago. I'm a sahm, and she's always really struggled in groups of children or being taken out of her routine right from being tiny and when joining preschool it became apparent that she couldn't cope with transitions, and literally struggles to function in a setting where there is a lot of noise and lots of kids. Thats simplifying it massively but for the purposes of keeping this brief! The recommendation to have her checked came from the preschool SENCo and her Keyworker who is extremely experienced.

Anyway, we've got the diagnosis and can begin moving forwards with strategies to help her. However I'm finding that lots of friends (who all have young children, all of whom are NT so not sure how they're experts all of a sudden) plus family members are being somewhat dismissive and almost disbelieving, constantly questioning what we've been told by the doctors. We had her assessed privately by a Professor who specialises in the area and a paediatric child psychologist at a well regarded clinic. She is also going through the NHS assessment route.

When I've told people, or explained that this is the reason we won't be doing something that makes her really distressed at the moment until we figure out how to make things easier for her etc people have been tending to say:

'Really? No that can't be right. She's so clever! Maybe she's just gifted instead?' (Her cognitive development is very advanced for her age, but her social development is very behind)

'But she can't have autism, she's been fine whenever I've seen her. She's just shy' (they've usually seen her at home or somewhere she's comfortable and generally she is 'fine' then and incidentally she's not shy at all when she's comfortable she'd chat the hind leg off a donkey)

'It's because you've been a sahm and she's not used to groups, she'll get over it' (she was the same when I took her to toddler groups when she was small, never left my side or interacted with any children)

'You've had postnatal anxiety and she's just copying you, she's anxious not autistic' (I did, when she was a baby, but am now recovered)

'I'm a SEN teacher and I wouldn't say she has autism'

'No one in our family has autism, where's she got it from? She's learned that behaviour from somewhere'

'She just needs to make a friend and she'll be fine'

And loads more. Basically the long and short of it is it would seem that people think that actually she's fine, just been mollycoddled by me being a sahm and needs to get over it.

Over the years, and pre diagnosis I have tended to decline invitations where I know that she'd struggle to enjoy things, or kick off entirely and need to be brought home because I've never seen the point in taking her to something 'fun' that she's only going to hate. Things that are fun for most children are not fun for her. It's pissed people off undoubtedly, I've lost friends, and I imagine people have thought I've said 'no thanks' because I don't want to bother rather than for her benefit. What they don't see is that not doing things has actually been isolating and very lonely for me.

I'm getting increasingly annoyed now that I know that actually I was right to put her needs first and not just force her to do things because I or someone else wanted to and we now know why and yet people are still being funny with me or making stupid comments. We are actually going to have to start pushing her out of her comfort zone a little more, but we need to do this in a controlled way with strategies to help. Not just say 'oh fuck it, she'll get over it'. She can't just 'learn to behave'. She can't. She doesn't actually 'misbehave' anyway, she just cries and wants to leave.

AIBU? Im getting to the end of my tether with this and it's only been a few weeks!

My DS was diagnosed, by a private centre (that the NHS use) late last year. The nursery have been the most amazing support and are currently supporting our EHCP assessment even though it won't benefit them because he'll be at school by the time the process is over. Friends and family have been exactly as OP describes. 'he doesn't look it' comments abound, also 'he'll grow out of it'. It doesn't surprise me as shamefully I probably would have made similar remarks trying to be helpful or sound supportive without really knowing what autism was. Now I've read dozens of books and had meeting after meeting with OT, therapists etc it feels like I've crossed an invisible boundary into a section of society I had no idea about that exists out of everyone else's vision. Some friends have become remarkably distant and just don't want to hear about it, MIL just thinks we're over reacting and just need to be a bit firmer with him. So I've just stopped engaging with those people because I'm too tired.

The one thing I would advise is not to tell people that your child is autistic, but to say that she has aspergers.

We all know that this phrase is being phased out by the profession, but for NT people who know jack-shit about autism, it goes down ‘better’ than saying autistic, which tends to make people react more.
When you say aspergers people who know a bit about ASD will get what you mean, people who don’t know much will tend to accept that the quirks are there to stay and will stop thinking that your ‘poor parenting’ is totally to blame, and some people will say “what’s that, then?” and you can then give them a quick explanation.

Some people don't really understand that girls with autism do not present in quite the same way, they also can struggle with the spectrum aspect of the condition. Do continue with nhs diagnosis though because however experienced the professor was, private diagnosis is often discredited due to the assumption that the dr will essentially give the diagnosis the parents are asking for because they paid ... not saying this is true but I have experienced this first hand, my daughter was had to be reassessed by the nhs otherwise school etc wouldn't accept it (was diagnosed overseas where we lived) and my friends son (diagnosed by a top guy on Harley street) had his diagnosis completely ignored until camhs assessed him

I just thought I'd add, that when I did some lectures on Autism as part of a course at a pretty good University (the Open) about 20 years ago - what I was taught is now massively out of date. Even though I was taught a lot of the most up to date research and by people who worked with Autistic Children on a day to day basis. Although learning about the Triad of difficulties was very helpful, and still is.
One thing that was interesting at the time was that they said that both girls were much less frequently diagnosed, and that those who were were usually at the "more disabled" end of the spectrum. Which of course nowadays makes more sense - as they were tending to only diagnose those individuals who were violent and disruptive, and not the quiet girl (or boy) in the corner who was in their own world, or even the ones who mask expertly.

Most useful things about that "little learning" : understanding why people can react very negatively if you suggest the cause might be partly "environmental" because it brings up fears of parent blaming and "refrigerator Mums"; and great respect for parents who have most "severely affected" children. Oh and realising just how new a lot of this information and understanding is. So if you haven't kept up with all the latest developments - then you really don't know much.

Hello lovely posters! I had family over yesterday afternoon so I haven't had a chance to read all the responses yet. I will do, and will reply to people properly when my youngest has a nap later this morning.

Ds had his nhs autism assessment last month with a speech and language therapist. There is a whole section on his report about eye contact. Ds is 15 and is better now with eye contact than he used to be. I actually mentioned how he does not find it easy and fortunately he was able to tell her how hard he does actually find it.

She wrote on the assessment report that she established eye contact with him but also noted the comments made by Ds and myself about how he finds it difficult.

Much of his assessment was about those very stereotypical traits of autism . He has poor communication and interpersonal skills, so it's quite obvious when you interact with him that there are issues (I'm surprised he made it to 15 without a diagnosis). Not sure what the outcome of the assessment would have been though if he had presented in a more subtle way.

Ds hates it when we talk about his difficulties especially with a health professionals/teachers. I had asked her at the start of the appointment of I could speak alone with her for a couple of minutes to explain how hard things had been without upsetting Ds. He was happy to consent to this. She refused.

@notanothercrapusername

I'm working on it. I don't know much about autism yet, but I'm fast learning

My DH was diagnosed in his 30s and DS1 (4) is at the beginning of the assessment schedule.

DH says that he would recommend NeuroTribes to anyone who wants to learn more about Autism. I'm listening to it from Audible and I won't lie, it is a hard listen but it is very interesting.

www.bookdepository.com/NeuroTribes-Steve-Silberman/9781760113643?ref=grid-view&qid=1565595378188&sr=1-1

Best of luck for the future.

@Piffle11 Your post yesterday really resonates with me. I've found similar. My expectations of becoming a SAHM were that I'd join my friends (who are a long standing group of friends, all of whom have young families and either don't work or are part time and spend a fair bit of time together) in meeting frequently with our babies/children, that they'd be popped down on the floor to all play nicely together while we sat around supervising and catching up. This is what they all do. I can't do it. I couldn't when DD was a baby because she had a plethora of feeding/medication issues that meant I rarely went anywhere with her. Once that was all resolved and she was toddling and I thought I'd be able to join in, it soon became apparent that she hated these gatherings. But I suspect that behind my back the commentary has always been that she was like that because I never (couldn't) took her anywhere when she was tiny. Or that I just couldn't be bothered perhaps. That I pandered to her.

Whenever I did take her, she wouldn't go near the other children. She'd cling to me, cry, refuse to get off my knee, ignore or scream at the other kids. So after two or three times of this I stopped taking her. I wouldn't force her off of me, no way. I didn't know that she was autistic then, not at all. But I knew that she couldn't cope with these things. But yeah; we're not 'useful' in the fact that we aren't part of the reciprocal play dates that they all do, I can't sit and have an adult conversation with my friends with DD present - she doesn't leave me if there are lots of other children her age, has ears like a bat and the understanding of a much older child so I have to watch what is spoken about in front of her.

I've tried to keep contact with these friends by socialising with them with no children - dinner/drinks in the evenings every few months leaving the children at home. But they all still see each other really regularly because they socialise with the children in tow. I've just come to accept that I'm not part of this now. I have now told them all and explained that we just can't do the big group meet ups, and asked if maybe we could start seeing each other one parent/set of children at a time and two of them have been really helpful with this. The others, not so much.

@SinkGirl 💐 to you for managing twins with such difficulties! That must be such hard work.

And this is the thing I'm quickly learning with autism. I don't consider my DD to have a disability. She has no where near the level of difficulty or danger that your children have. Yet your children have the same condition, but a completely different scale of it. One child with autism can clearly be considered disabled because of it. Others, not so.

@BlankTimes Thanks for the links. Also yes anxiety. DD presents with high levels of anxiety in her preschool setting. It's horrible to read the reports. I don't recognise the child that they write about. It breaks my heart.

Of course, she must've 'caught' that from me when I briefly suffered from post natal anxiety after she was born for her first 18m. No worries about the fact that the counsellor I saw told me that actually he'd describe my anxiety as a perfectly rational stress response to an exceptionally traumatic birth and poorly baby for a year afterwards.

The more and more I learn, the more I think my anxiety has almost been caused by DD, not the other way round. That sounds awful and like I'm blaming her, I'm truly not. But I've been in the past so very very anxious and it was always, without fail, about getting out and about with her. Well, that's because of how she was when I did. It is even anxiety if actually, you're declining to do things because you know it won't end well or will highly distress your child so there's no point? Or is it just asserting yourself, saying 'no' and people thinking it's you who can't cope because they don't like what you say or it inconveniences them?Who knows.

I have a DD the same age with autism. I've learnt to ignore a lot of people when they make stupid, ignorant comments.

@notanothercrapusername, the social model of disability helps me with the whole “is my child disabled” thing. Social model says it isn’t a condition that makes someone disabled, but society’s failure to accommodate that condition. So 99% of the time someone who functions quite well with their autism might not seem disabled. But there will be times when school/work/public services fail to make the adjustments needed to accommodate someone. When they do that, they are disabling them.

I have two kids with autism. One could potentially be characterised as more high functioning than the other (fine in a mainstream school, has friends, independent, masks quite well). But actually, both of them fluctuate in how well they deal with stuff. Some things my lower functioning child is fine with, my higher functioning one would fall apart at. And she spends a lot more time trying to fit in and getting exhausted by it, whereas he is more “yeah whatever, this is me, deal with it”.

It’s why I don’t find the high functioning/low functioning label very helpful.

@LittleMy77 That's what DD is like. She's 'fine' with adults and actually some older children - the doctor says because she's learned she can trust their behaviour. They're not as unpredictable as children her age. She had a lovely time playing at the park with a six year old girl the other day. But she wouldn't go near her little brother, who was nearly three.

She's also not yet toilet trained despite my best efforts. She knows what to do and when to do it. She just refuses to sit on the toilet. My mother keeps talking to her about it 'you need to wear knickers like a big girl!' and I've had to pull her aside and tell her to stop it.

She'll get there. Eventually!

Any tips on toilet training gratefully received!

There are so many posts to reply to everyone individually, but thank you everyone. Any information is useful, I have a lot of learning to do. And I really appreciate the support.

A few things that have cropped up in lots of posts:

DD has great eye contact so that's another classic autism thing that she doesn't fit with. Until she's really uncomfortable/anxious and then she looks upwards loads. She stops as soon as I arrive.

I think, even at three, she's already learning to mask.

I did not 'pay for a diagnosis'. Actually, I'd have liked nothing more than to have paid out a fuck-ton of cash for her to have been assessed and then be told that she's fine and actually I've given her behavioural issues somehow. Because that's an easy fix! I didn't pay for a diagnosis I paid for the assessment and the doctors clinical opinion. We went private for the simple reason that I am not prepared to wait years and years for an NHS assessment and so wait for any support. She is also going down the NHS route too, but it will take a long time. The report we have, which includes a diagnosis means that in the interim we'll be able to start putting strategies in place at preschool and home immediately.

@notanothercrapusername
I don't recognise the child that they write about. It breaks my heart

That's because all the reports ONLY focus on the deficits, they don't give a balanced view of your child, only the bits that need a helping hand.

I know @BlankTimes. It's just hard reading about this sad little girl when I'm not there. They say she has no empathy. I get that, because when she's with her peers she freaks out and doesn't. At home though, if her sibling hurts herself, she rushes over to cuddle and comfort her. She is so empathetic and kind.

toilet training tip would be to talk about it with her....and find out from her, when she wants to give it a go and even how she wants to go about it.

We did this for DD, who sounds so very similar to your DD its making me think we should have had her assessed also, and we had a stress free, accident free experience.

She was probably just a little older than your DD is now when she felt ready and got it done.

I feel for you op. Why f and f question the clinical diagnosis of a medical professional is ridiculous. Keep reiterating that she has been formally diagnosed and it will help her. You recognised it and you know your daughter best. ASD is a spectrum and there's such a massive difference between individuals. My nephew really struggles with transitions, has lots of meltdowns and is violent to my sil but is super clever and like your dd will often talk at length, particularly if it's one of his special interests. She has massive anxiety taking him out into public places, noisy, food too hot, because he would have awful meltdowns. Often she would cancel on parties/family meals as she knew he would get upset and wasn't worth the stress to either of them. SIL explains every step of day, sets timers on phone for leaving, uses visual charts to reward etc. You've done the best thing getting her diagnosed now - school can put things in place to support right from the start to ease transitions and hopefully she'll thrive on the routine of it all.

Fizzypoo you know that the people undertaking diagnostic work in the NHS and private sectors are usually the same people, right?
Just wanted to say re ABA - please do tbe influenced by scare stories. Bad ABA is like bad anything - bad. Good ABA can be life-changing. Telling t’other from which is the key. Feel free to PM if you want to know more.

@MollyButton yes, out of date ideas do still circulate.
You mentioned the spectrum having ends, i.e. it being envisioned as a linear scale from low to high. Here's the latest view on that by two autistic people. I posted these links upthread in case anyone thinks they've got deja vu.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

Bananasplitter

notanothercrapusername it is so very hard seeing a different child to the one the professionals write about in their reports.

On empathy, a group of autistic women on the SN boards were discussing this, how they appeared to outsiders to be indifferent i.e. showing no empathy, whilst inside they were absolutely torn apart with empathy, much more than an NT would be in the same situation. They felt they were definitely over-empathic as opposed to the observation they showed no empathy in that situation. It was as though they had to hold it in otherwise it would have overwhelmed them entirely.

From seeing my own dd grow into young adulthood, I'd say your daughter will grow and her needs and her presentations of her autism at different stages in her life will change. Some things she struggles with now will fade away, some things will seem new, some will stay about the same level in the same circumstances. None of us can predict which of these things will be still evident in adulthood, all we can do is give our support to the best of our ability and you're already on that road.

At some point in childhood she may become markedly different to her peers and you may wish to apply for DLA. Then at 16 it's PIP, both are designed to fund any extra support a child needs and both are quite ghastly to apply for because once more they only focus on the negative and every obstacle is put in your way to discourage you from completing the application. Don't worry about that now, just bear it in mind as a source of extra funding for helping her if she needs it.

She's already had a great deal of support from you and I'm sure she'll grow to be a very successful young woman because of your insight and determination to get her the help she needs.

t I've been in the past so very very anxious and it was always, without fail, about getting out and about with her.

I have a few friends with children with SEN . I see this a lot , especially the first time at my house or as they get more used to us , just the first few minutes.

Perched on the side, eyes on their child, looking like they're ready to jump or leave at any second. They can seem quite distracted or like they're not listening.

However I know it's all because 1.they're watching their kid for signs of distress or sensory overload, making sure they're comfortable and things are going at a pace they are happy with etc. and 2. They worry about the hosts reaction,the judgement, the fallout if anything happens, the host child getting upset etc.

I've had friends that wouldn't even go to the bathroom for fear something might happen in their absence. I love that eventually both children and parents manage to relax and enjoy themselves whichever form that takes.(from watching bugs in the garden , to rearranging all of DD's LEGOs in the RIGHT way, to sitting in a corner reading her books to whatever)

What I was trying to say is that your anxiety is to be expected and understandable and two fold, one worry about your child, another about the judgement and gossip and comments it might cause.

And the comments they make aren't going to make you feel comfortable or confident that you will be met with support or understanding if/when needed. I don't blame you for not being willing to subject your child or yourself to that. You have enough on your plate.

not I can relate on so many levels to your previous post about what I thought it'd be like to be a SAHM and the connections and networks I'd build locally, and that I'd take DS out for classes, playdates etc with friends

We ended up very isolated as I felt unable to go to lots of classes (hated paint, messy play, anything too noisy) plus he'd often get sensory overload and scream until we left. He also refused point blank to play / hang out with other kids (even ones we knew) and would be glued to me. Like you, we've built a decent relationship with a couple of families who we see often now and that works and is enough to push out of the comfort zone, without being too much for him (altho he still tries the limpet approach but less, lol)

We've been lucky in that here (we're not in the UK) they throw a ton of services (OT, speech etc) at kids under 5 if they qualify.

We received services for him and had him in nursery last year with a 1:1 but we had a pretty uneven year as they were treating him with the assumption he was autistic (he's not but shares a lot of traits) and had oppositional defiance disorder (at 3, to say I was sceptical doesn't cover it!) And they got really annoyed / frustrated that he wouldn't respond to their usual methods of working with an autistic kid as a result.

Hearing almost daily about how badly he was doing was awful - at one point I told the 1:1 that it was about time she also started giving feedback on where he was doing well / improvements too as otherwise it really felt like everything was doomed. My biggest take away from last year was to trust my instinct and how to advocate for your kid (even with professionals) its bloody exhausting tho and can be a full time job in itself

Re potty training - we've played the long game but we got there eventually. We started 3 month before his 3rd birthday as we'd had building work in our bathrooms (couldn't face trying with toilets out of action!) and he'd finally started to show he knew when he went. He has sensory processing issues so he was slower to register discomfort etc

We did a weekend of it, and cracked wees within a week using the "oh Crap!' method and only had 2 accidents since then (its 10 months later now). We initially started off as well with poo, but that deteriorated as he was totally freaked out (again, sensory related). Without going into graphic detail he would only go in a nappy. He'd tell me when he needed to go and then ask for one to be put on, go and then we'd clean up and put underpants on. We've spent the last 3 months telling him he would soon be using the toilet and showing him how the nappy stash was getting smaller and when it was gone that was it.

Something clicked and when they ran out, we managed to get him to use the toilet with no issue, and its been ok since then (fingers crossed) I suspect its a combination of less sensory issues / more able to tell us his fears as his speech has improved hugely plus he's the kind of kid that half measures don't work with. He's also been dry at night for 9 months without us even trying - as soon as we'd mastered day time toilet use, he went straight to dry at night, even when we initially used a night nappy

@BlankTimes It's funny you say about the women chatting on the SN boards about empathy. I've often been accused of being cold, clinical, formal etc and lacking in empathy. Not as a mother, though. When I managed staff (for a number of years, I had a successful career at a fairly senior level pre becoming a sahm) and an employee cried in front of me all I could muster was a pat on the shoulder. I'm like that with most people unless I'm really close to them. It makes me feel beyond awkward. But I'm really an over empathiser. Other people's pain hurts me and I dwell on it for ages. I find my children's pain quite literally unbearable although I think most mothers surely feel this way.

When I had counselling for PNA I was told that I over-empathise with my children (or child, as it was then). That it'd do her the world of good to learn to cope without me.

@LittleMy77 It's tough isn't it. Expectations v reality! I was by far the last in my group to have a baby too, so I'd often pop along to their little gatherings when I was pregnant and on maternity leave (I went on leave quite early because I was too well).

I never found 10 children in a room overwhelming then. It all looked like great fun. I looked forward to being able to join the fray if I'm honest. I thought my child would just slot right in with the others. Then DD arrived and it became evident that it wasn't going to happen and I had to accept that actually the mums-group socialising that I'd waited so long to join in with was a bust. It was pretty crushing but I guess over the years I've just accepted it.