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!

What you are experiencing is exactly why my DH and I hardly talk to any of our family and 'friends' anymore. When my DS was 18 months I knew something wasn't 'right': MIL's DH (not my DH's DF) told me I was 'bloody oversensitive and daft' for voicing my concerns. MIL wanted to know 'where he's got that from'. People kept telling me I just needed a 'firm hand' when DS had meltdowns: 'it's because he knows you'll let him get away with it'. DS wouldn't stay in bed, didn't sleep: MIL and her twat DH told me to lock him in his room and not go in 'til morning. DS has a very restricted diet: I was told that it was my fault: I should 'make' him eat what I tell him to (how, exactly?) 'He'll eat it when he's hungry enough' (no, he won't, actually.) Fucking ignorant people whose whole knowledge of autism rested on 'Rainman' … 'what's his gift?' They're all genius, aren't they?' No, actually. And 'when will he grow out of it?' I had 'friends' who no longer wanted us at their house: I would never let my DS wreck anyone's property - I'm not like that, I would always follow him around making sure he didn't touch stuff, etc, and yet the invitations to things dried up. We weren't as useful as other families, cos our DS couldn't play with the other children. Even MIL dropped him like a fucking hot stone from the day I told her he had ASC. She never asked to have him again, even though he was exactly the same child as the one she'd had the week before. My parents talk to him like he's a baby: practically coochy coo. They have no idea how to communicate with him, even though he has a system that works - they just can't be arsed to learn it. We've had family parties where only DS2 has been invited: if we query it we get 'oh but DS1 wouldn't enjoy it, would he?' as if they're doing him a favour by excluding him. People telling me he can't have ASC because he 'looks them in the eye' … 'I mean, 'they' can't do that, can they?' Acting as though people with ASC are a different species. I even had some complete stranger in the doctor's surgery telling me that 'to my mind, he's not ASC. Look at the way he's doing XXX. ASC people can't do that.' Yeah, cos people with ASC are all exactly the same, aren't they? On the plus side, we've really cut the dead wood out of our lives.

We have had this too, mostly in the run up to diagnosis. “Oh he’s fine, he just needs his speech to catch up a bit. He’s not that different to most children. He just needs boundaries. You don’t want to label him do you?”

And now he has a diagnosis family have accepted it but still expect everything to be ok. You will face a lot of “well they just have to learn” rather than people understanding that actually maybe they should adjust a bit themselves.

Also what people see of autism is so limited. The most lots of people will know is Dustin Hoffman in Rainman. Or Sheldon in Big Bang Theory (I know he isn’t explicitly autistic but that’s the kind of obsessive genius male figure they expect). It is so tiresome.

Autism campaigners have huge difficulties with the powerful ABA industry which gains support from parents who want to change their children because they make their lives so difficult ( and I do not underestimate how difficult it can be ) and people who seek to profit from parental anxiety.

This is such a one-sided view it’s ridiculous.

My twins don’t have ABA, but if they did it wouldn’t be because of how difficult I find them. It would be because of how difficult they find the world. My children are completely nonverbal, sensory seeking to a dangerous level, no understanding of language, no way to communicate, and it’s really bloody infuriating to be told by people who are able to function adequately in society that the issues my children have are just a difference and not a disability.

I'm with you OP. My DD1 (6) was formally diagnosed through NHS CAMHS last month after a full year of various appointments.

Her teacher last year (Primary 1) told her that she didn't believe in autism. Riiiiggghhhttt...

Just so helpful 🙄

YANBU. I have a DD with ADHD, diagnosed over a year ago, and sadly the reactions you describe are very common, and yes very irritating. Close family (incl parents and PIL) were cynical for a long time but have mostly come around now, though they still make the odd comment about us "drugging her"
Some friends I still find very dismissive, constantly saying "oh that's just normal child behaviour" (er, no it's not). So I now know which friends to avoid talking about it with. People with only NT DCs will just find it harder to understand unfortunately. Make the right decisions for your DC (which you are), and nod and smile when people are idiots.

This is really common op, you're not alone. The problem is when they are so young that a lot of the signs you will have picked up on are normal behaviours (or similar) for young children. Sensory overload meltdowns can look like tantrums, not sharing, sensory things, schemas/interests, being clingy. So your friends see snapshots of your child and they think 'well my child did that sometimes too'.

You've just got to trust that you know your child best, you've had a formal diagnosis and they are only seeing snippets.

You do need to grow that tough skin. And maybe when someone tries to say "She's fine", bluntly tell them "That is not helpful, she is not fine." And give them a book or leaflet to read.
If my stuck in his ways FIL could change on discovering two of his GC were on the spectrum then anyone can.

I'd suggest you find a support group - my local NAS have a Mum's of Girls one, which is helpful - as other people know all about these niggles (and can also advise on local provision). The SN Chat here can also be helpful.
You do need somewhere to vent.

DS1 is 13 and every now and then I still hear the "but he makes eye contact so it can't be Autism" line. I inevitably want to Cato-kick whoever says it, but have learned to frown and state "Absolutely, but as most people are aware Autism runs much deeper than just eye contact. Fortunately we've met many professionals who've been able to offer us more insight and support".

Ultimately, you can't win this game. My Grandma used to tell me not to fight with pigs because you'll both end up dirty and the pig likes it; I apply it to DS1's ASD because the people making glib comments don't actually want to understand, support or listen. They have no interest in who DS1 actually is, so I don't engage. Anyone stupid enough to make presumptuous comments about a child with ASD isn't someone I'm willing to spend time and energy on any more.

Been there OP, heard all the comments, have heard lots more. Close relative phoned bright and breezy to ask if dd had "grown out of her dyspraxia" I put the phone down on her because I'd have exploded at her otherwise. Apparently her friend a SENCO had said all children with dyspraxia 'grow out of it' in primary school. For anyone not au fait with that dx, it's lifelong, as is ASD and many others.

No-one would listen to me when dd was young, not my GP, not school, not family and the particular hard to take refusal, not her father. it took me beating my head against a brick wall of denial and accusations of being a helicopter parent, pandering etc. until she was 10 to see a paed, then everyone said the paed had only written what I'd said (long early developmental history) so must be wrong. Won't bore you with the rest of the saga, but even after full dx and many independent reports and assessments, the minimising and ignoring of her needs continues within the family. We are very low contact now, for my sanity more than anything.

Some people don't want to understand how to help, some people aren't interested. Of all the dx a child could have, somehow Autism is 'not believed' by a huge section of professionals and relatives, who all ought to know better.

Here's something you can show them for now, some - insert favourite disparaging term here - will undoubtedly tell you "We're all on the spectrum somewhere" "She must be on the very high end of the spectrum" here are two links you can show them to stop them in their tracks.

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/

Wonderful responses from @Redexpat I know your dd is only little yet OP, but take it from me as a parent of an autistic adult, the minimising and dismissal of your dd's neds can be constant throughout her life. One of our latest was a hospital consultant who when told 2 things dd couldn't do because of her anxiety, snapped 'Don't be ridiculous, of course she can do that'

No-one's so far mentioned anxiety, it can be a driver for behaviour, once a child's anxiety level is high, then they can't deal with things and their behaviour - which is NOT naughtiness, it's just showing you they are overwhelmed the only way they know how. The report you mentioned detailed how your dd may not cope well during unstructured times at school, you can ask that she has structure to break and lunchtimes, she won't be the only child who could benefit from it.
Other things to watch for wobbles at school, all the 'different' days they have, red nose day, dress as a character from a book day etc. and all of the 'winding down' events the last couple of weeks of school terms where all the structure goes to the wall are all areas where extra support could be needed.

You're doing brilliantly OP, just keep on as you are and grow a thicker skin. One day you'll realise the minimisers and dismissers' opinions aren't worth listening to. Some you can educate, others you lose contact with, what matters is your dd and your willingness to help her, irrespective of what anyone else says.

Yes. People are twats. Everyone thinks they know better.

My Nanna often tells me how it's 'mild auitism' i think she thinks saying that to me will make me realise it's not that bad 🤦🏻‍♀

My Auntie thought I needed to give my autistic child 'more freedom' when he was 8 and that if I let him out to play he would learn to be 'normal'

All they needed was to be understood. You will do that for your DC

Sinkgirl, I am sorry if I appeared one sided, my comment came from the attacks I have seen on Autism campaigners, sometime really nasty. I do absolutely understand that individual needs are complex and different, that was also my point. Here is an autistic perspective on ABA.

" ABA. Applied Behaviour Analysis, more and more concerns arise from research.

Here are a sample few papers that may be of value to you, in your quest to think deeply about autism and what's needed. Deeply in what we know about autism in 2019, not what we knew in 1940, to be clear.

www.tandfonline.com/doi/full/10.1080/23311908.2019.1641258
That is quite a piece of writing. It's an opinion piece, not fresh research, but the links within it will lead to a whole world of concerns about ABA.

If we want to continue with doing our best for autistic children, what about this

link.springer.com/article/10.1007%2Fs10803-017-3306-y

An interesting paper showing that in music therapy, it was in fact the quality of the relationship with the tutor that made a difference, not the therapy.

What about this one?
journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251
This paper noted that repetitive movement seemed, if anything, to help autistic concentration, not get in the way of it.

And this one?
link.springer.com/article/10.1007%2Fs10803-019-04138-2
It shows that it didn't seem to matter which therapy autistic children had, or for how long/how many hours. They still developed skills. So, that hectic dash to get them into the best 'therapy', for the most possible hours, at the earliest age? Might as well just sit back and read a newspaper, whilst a good Speech and Language person and a good Occupational Therapist sort out a best way for the fabulous young person to communicate, and the best way for them to do basic skills in a world that is too overwhelming for most of us.

...and you can watch this fabulous short clip. vimeo.com/52193530 2 mins. Turn sound on, really really loud. That sort of overwhelming.

ABA is problematic, in my view. Here's a video of some. Watch the first minute. See how often the child is grabbed, moved, grabbed, moved, grabbed, moved. How the toy is given, the snatched away. Endless endless repetitive meaningless tasks. That's not OK, from my perspective. I wouldn't recommend it.

Autistic 'behaviour' doesn't have one neat cause, most of the time.

It may have many causes. Some historic, from memories or emotions of past situations. Some trauma-based, from poor treatment. Some around sensory need that isn't easy to spot. Some around communication, using autistic language, not non-autistic language. Yes, that's a real thing. The cause may be health related, or a spiritual or artistic need. It may in fact relate to entirely different things. Personality, ADHD, Ehlers Danlos Syndromes Restless Leg Syndrome, for example.

It may be many of those things, all at once.

But here's the terrifying bit. (The ad I mentioned that is appearing on local Facebook pages)

Who would have guessed that an 18 yr old without a qualification of any kind can turn up at your door as a 'tutor', having probably never even knowingly seen a young autistic person before....and you would pay them to do a therapy on your beloved child.

Yes, some ABA specialists are qualified in child development as well, and I'm not talking about the ones who hold an additional appropriate qualification for applying therapies to children who are vulnerable and may have complex, overlapping and overshadowing diagnoses and situations. I'm talking about the average ABA interventionist at a parent's door.

This isn't a 'gold standard', is it.

This is playing with children's brains, without any actual RCT evidence to prove a thing. (RCT evidence is a proper big study, with children given a therapy...and other children not given the therapy...and really good long term studies of who did best, what harms, etc).

My concerns about ABA are shared by simply vast numbers. Here's just one example of many many surveys.

That's from autisticnotweird.com/2018survey/

So, what helps?

Changing the attitude of the people around us.
The people around us learning about autism.
The people around us enabling us to see, hear and thrive, with simple accommodations.
The people around us respecting our different communication methods, and learning about them, and enabling us to learn about theirs. Both enjoying that learning. Both enjoying sharing. Double empathy.
Allowing a child to grow in their own time, whilst of course keeping them safe. Always take top advice on safety concerns.
Accessing good autistic experts to interpret your child's behaviour and help with sensory accommodations.
Accessing good speech and language experts, and occupational therapists who are trained in autism and sensory needs.
Trusting your instincts on which schools care about your child, if a choice is available to you.
Enjoying one another's company, as companions in life's journey. Watching the young person grow, and thrive, and share, in that caring and supportive environment.
Learning from autistic people online. So many blog, and give of their time freely on social media. But respect their boundaries, and their way of communicating. Ours is direct, honest, straight to the point, not 'rude'.
Twitter, with its #AskingAutistics hashtags can be useful. Or following threads like those I and others put on there to help parents with all sorts of autistic children. An example:

You might want to consider the SPELL training that's available from good providers.
You might want to get your school or organisation to use Synergy training from AT-Autism

You might just want to do your own thing. Many do. I know their autistic children. They're wonderful.

It's about love, you see. It's about love, and thriving, and sharing. And respecting difference.

Goodness me, we need families to have good support. No-one is doubting that at all. And we need young people's needs to be respected and good supports put in place for them, based on their needs, not on someone's probably faulty understanding of 'behaviours'.

But, without deep understanding and caring, there won't be thriving. There can't be. Nothing thrives in a forced repetitive intervention, pulled about and denied basics until there's total compliance.

I had just the opposite everyone telling me that my identical twin boys were autistic because they refused to talk to anyone outside the immediate family. I had medical professionals telling me they were!
But a couple of parents that I knew whose DC's were autistic said they didn't think they were.
Through TAMBA the boys had an all day assessment with the leading expert (at the time) on Autism in the UK.
He said their problems were caused by the fact that they were identical twins in a larger family and they would be fine if kept seperate as much as possible.
They are now 33, one married the other with a long term partner.
Its very annoying when those around you think they know your DC's better than you do!

ober similar here too!

My parents are on board and try to be helpful but some stuff (late potty training for one ) they were all "I can't believe he's not trained by now, its ridiculous' etc etc. The IL's are all 'oh, he never sits still / why is he running round / what's up with him' (usually prompted by being in their very noisy flat and him sensory seeking to block out the overload even tho we've asked them umpteen times to turn off the tv etc_

notanother you're definitely not being UR! I suspect you may also face more pushback as its DD - lots of people still believe that it's mainly boys who are autistic and often don't understand that it can present very differently in girls.

I've found that our more experienced / older therapists can often be very set in their views about what they think something is / presents as and will argue until their blue in the face, like your SEN person

The other thing that can throw ppl off is that kids can often present with NT behavior to adults / older kids / people they know well because they are trusted and they can predict behavior. I find DS is fine with this, but put him in amongst his young peer group and he can't cope due to the noise and unpredictability of them.

We've had to do a lot of trying to find the line between comfort zone pushing and tantrums / meltdowns. Now he's nearly 4 things have evened out a bit but I'll be the first to admit last year nearly broke me at various points

Things that helped me (aside from obsessive googling ) was finding the SN forums on here - look for the Goose and Carrot thread for general ambling chat and people who innately understand these sort of conversations and frustrations - and connecting with other SN parents locally. If nothing else, its cathartic to eat biscuits and vent about shit that NT parents don't really get (despite best intentions)

Different diagnosis and situation because it's a parent so is a whole other ball game but I get similar reactions to my mother having Alzheimer's.

"But I saw her in the supermarket with your dad last week and she seemed okay!"

"Sure we all get forgetful."

Yes, it's great she was having a good day - I love to hear that - it doesn't mean she doesn't have an underlying condition though. Also there's a big difference between forgetting where you put your keys and not knowing what a saucepan is for anymore.

I empathise OP. You feel like you're trying to convince people of the issue so that they understand and can perhaps respond appropriately if ever needed.

Blanktimes That makes me so cross, my dyspraxic twenty something is laid up with a complex fracture of her tibia, 4 hours of surgery, 6 days in hospital, six months of rehab ahead. The latest and worst loss in her lifelong battle with stairs. Cured in Primary School?

The worst thing is that I did not get that was her issue until she was in her teens. We are a dyslexic family. I got that from when she was a toddler and she had brilliant intervention at 6 which has helped her cope through school and university but I missed that the sensory issues, the tellings off for being so slow to dress and undress for PE, the difficulties with PE, all the falls and three broken bones before she was 11, the migraines after choir practise in spite of loving music and having a singing talent, the hatred of perfume and other strong smells to the point of throwing up if they were very strong, only coping with shops for less than an hour were actually part of another issue, because I was in the rabbit hole of the dyslexic label. I did do all I could to minimise the issues, activities to help her balance, not exposing her to environments that she found stressful but I still feel guilty that I did not defend her in the face of teachers and peers who gave her a hard time for being different in that way.

LittleMy77 Sun 11-Aug-19 15:07:47

The other thing that can throw ppl off is that kids can often present with NT behavior to adults / older kids / people they know well because they are trusted and they can predict behavior. I find DS is fine with this, but put him in amongst his young peer group and he can't cope due to the noise and unpredictability of them.

This was our DS. First put on assessment pathway in Year 5, referred to psychologists by the SALT team because he ticked all their boxes but not the paediatrician's, and we insisted that there were issues, we though it might be SCD rather than autism. He too is fine with adults, it's with his peers he has issues although he does have his tribe of a good group of friends. It was the group OT sessions with others around his age which finally ticked the boxes to get him a diagnosis, and even then it was a close thing.

Yup, it’s people being desperate to kid themselves that she’s fiiine because then there’s no risk that they’ll have to feel bad in any way, for her or for you. They don’t even realise they’re doing it.

My child has major organ failure, totally concrete medical diagnosis, medication for life, no cure etc. The number of people who tell me he’ll be fiiine when he gets older, or that the medication is a cure, or that I’m mollycoddling him because really, he’s fiiiine ...

And yes, it’s isolating. Thank God for the Internet.

I've had similar comments to you some from specialist education and SENCO usually along the lines of she makes eye contact.

I do feel like having a massive go at them sometimes but usually say yes girls are known to present differently and do something called masking you fuckwit

My dd is autistic- the crap I get from people who refuse to believe it is shocking. There really isn't enough publicly known about how girls present- in fact, public knowledge is woefully misguided into an understanding of a very few specific traits- it's just that the handful of traits understood tend to present more in boys.

I've had teachers argue against her diagnosis , argue against their senco within the school, insist that I need to stop labelling her etc. "She's got lots of friends so she can't be" "she makes eye contact!" "Shes too clever" it's like a that's not my ...... book but with reasons people think she's not autistic. (Maybe nas should make a "that's not my autism book- perhaps it would educate people on the breadths and difference in the asd spectrum!)

It can be a nightmare, but overall the diagnosis has definitely improved her life over the years/ so I'll keep correcting and insisting and indeed "labelling" her.

Good luck op

OP I hear you! I'm autistic, so are my 3 kids. My family (all medics) deny autism exists!

I've lost count of the ignorant comments along the years.

The most recent was from a colleague (we work supporting young adults with autism) who, on discovering my diagnosis, commented with shock "but you look so normal????"

Wtf is normal and what does it look like?

Secondly, that level of sheer ignorance from a woman who works with autistic young adults was staggering to me.

I feel for you. We ended up taking our DD out of the local school and enrolling her in a local Prep. School where she excelled. They suggested we have her IQ tested and she came out with a score of 130 which means she is 30 points above the average person! She is now at high school and needs learning support because she needs a scribe and help to concentrate but the head of learning support struggles to understand that she is quite intelligent but still has a need for their services. I would suggest joining some groups for parents with similar diagnosis. It's been a great help to us to have parents at hand with advice and suggestions as to what worked for them. Good luck.

Totally not being unreasonable l don’t think. Even if you had your suspicions it must have been a shock. Without people dismissing it / minimising it / somehow saying it’s your fault etc. As others have said then girls present differently with it so maybe that’s confusing others. Thinking of you.

@Fizzypoo
If I'm totally honest I sometimes think that children who have had private diagnoses have been missed diagnosed. I would 'believe' a NHS diagnosis more

For an NHS dx currently the waitlist is around 18 months to 2 years. Somerset have said they will not dx ASD in anyone over 5 years old.

What are parents supposed to do to get help for their dc?. Some schools are brilliant and provide interventions based on dc's needs which is how it should be for all children. However, a large proportion of schools will not provide anything that requires funding without a dx. that's the reality, we've all heard how it should be, but in practise, it's not like that.

Some qualified professional medics who dx children privately also work for the NHS 1 or 2 days per week, are you insinuating that in their NHS practice they will dx fairly and in their private practice they will dx some children differently just because they are paid?

Do you know how many children are referred for dx yet do not meet the criteria and do not get a dx in either sector?

I cannot stress this next point enough. If you have any such suspicions that a medical professional is handing out diagnoses simply because parents have paid, then I implore you to report them to the GMC as a matter of urgency.

However, there was a recent thread about autism that was totally derailed by someone saying something very similar. They said a close relative of theirs had a child that they knew had no AN, yet the mother had pestered and paid for this dx which the medic gave only for financial gain. They said they had evidence that the child had no AN, yet when asked to produce that evidence, admitted that it was their own unqualified observations that had led them to that conclusion.
If that's you posting under another name, please don't derail this thread with your nonsense like you did the last one.

Children are often dxd by a multi-disciplinary team both on the NHS and privately, so stories of paying one medic for a dx for a child always sound ill-informed.

@InTheHeatofLisbon very good point. What is normal?! No one is normal as it doesn’t exist

EL8888 DS1 asked me once. I responded by saying "haven't a clue pal, I'm not really an authority on it." He laughed and said "I'll ask grandad" to which I said "I wouldn't, he's not either"

So I told him normal is relative. What's normal to us isn't normal to others. We make our own normal.

I hate that bloody word.