Undermining comments about autism

[Opal93]

I am becoming increasingly upset with more and more ridiculous comments about autism. I know for a long time people didn’t understand it but surely there’s enough on TV and the internet for people to be at least a little bit more informed? Here are a few of the most ridiculous comments, ranging from old to young people. I know none of them come from malice but I do think to myself “SERIOUSLY??” And often don’t know how to respond. “ he doesn’t look autistic.” “At least it’s not a disability” “at least it’s not Down’s syndrome” “did you find out at your scan and were you offered a termination?” “He’s not that bad” “at least he might be a genius” “you shouldn’t have another baby what if it is like him” “he just needs more discipline”

Who has been criticised and where?

We were speaking generally about attitudes we have encountered, as I just was. At no point did I say it was on this thread, but actually there have been multiple posts that try to use learning disabilities as the reason children like mine are disabled rather than autism itself.

My comment wasn't anything to do with that. It is about the patronising way in which several autistic posters have been addressed, with NT posters "explaining" to them that autism impacts different people in very different ways. We all know that.

I was asking where anyone had been told that their description of their own personal experience was offensive, which is what you said in your first comment.

I haven’t seen anyone be shot down for describing their own experience as their own experience. I have seen criticism of those who think they can speak for those autistic people who can’t speak for themselves. You’re also assuming that these posts were made by NT parents when many of the parents posting here are not NT.

I agree that autistic people know that autism impacts every autistic person differently, yet that’s not always what’s expressed.

[quote Sendsystemsucks]@timeforanewnameagain because the vocal group of autistic people pressured for it to be removed. There absolutely should be recognition of severity[/quote]
It's a bit like the 'high functioning' thing isn't it.

Now I don't for a second doubt the impact that autism has on my daughter. It impacts her daily, hourly even. She has some really big struggles. She has 1-1 support at school on an EHCP, I am her carer. She's 5.

But she can talk at a level far advanced to her age (her understanding isn't quite as advanced). Her reading, writing and numeracy is also advanced. She has no toileting issues and was trained at 3.5 so a little later than is the norm for an NT child but not excessively so. She sleeps well. She is a fussy eater, but she eats from each food group so she is physically healthy.

So is she high functioning in comparison to a child who is non verbal, unable to use a toilet, unable to dress themselves, cannot attend school or cope with school even with 1-1 support? Yes, I'd say she is. She functions more successfully and independently that some other children with autism.

But if you say you have a child who is high functioning my god do you get your arse handed to you. I don't mean that I don't think she has huge difficulties. She does. I live with them! But to compare her to a child who has things far far harder is unfair and offensive.

High functioning means she doesn’t have an IQ under 70. It’s nothing to do with who helps her toilet or wash or if she can communicate verbally.

Yes technically that's what it means. But that's not generally what people mean when they say high functioning. I don't know what her IQ was when she was diagnosed she was too young to be tested on IQ (she was only 3).

That's the thing autism is so bloody complex my friends daughter is non verbal but understands letters and numbers and can spell words my son is a few years older and doesn't understand any of this ,my friends daughter can operate an iPad my son can't ,but he can attempt to dress himself ,feed himself he ,s finally toilet trained ,my friends child can't do any of these things but which child is more high functioning??

I think using a technical term to mean something totally different to its definition is very difficult in a discussion of this nature. It’s very unhelpful if you are high functioning but need support in areas which are associated with the support of those with severe learning disabilities. The whole point of the term is to be able to express this and it’s particularly important for many many individuals who are autistic because they are the ones who often present as far less intellectually able than they are.

Very true @5zeds right now I'm not bothered about reading and writing and other academic skills ,my son shows no interest in this ,but he does show interest in life skills he loves to attempt to dress himself even though we get t shirts on back to front inside out etc ,he ,s also very interested in cooking and using the microwave etc at the moment I'm more interested in life skills for him

I have two autistic dds. Both verbal, in mainstream school etc. But I have no idea if either will ever be independent. Older one has ADHD and her executive functioning is so appalling at the moment (she's 13) - she needs loads of support. Younger one's mental health is so poor it's hugely disabling for her and I don't know whether she'll stay in school or do any exams etc. She often can't leave the house. When she does though she is a real masker. I think part of her deteriorating mental health is because of the chasm between her public self and her private self.

Meant to say that, though parenting them is really bloody exhausting and I worry so much about the future, I totally recognise that they are lucky to be as able as they are.

I was asked if there was a pill that could cure DS. I've heard so many stupid comments I just nod and smile now. I do agree that people are absolutely clueless unless it has crossed their radar with a family member or whatever.

DS is bright, engaging, loves a chat, indeed never stops chatting and is not the "vegetable" some people think he should be. However, early diagnosis and intervention made a massive difference for him. I will always be grateful for that.

I agree with you sinkgirl

I’m autistic and I don’t feel ‘shot down’ or in any way offended by this thread.

@FontyMcFontface

I would take a cure in a heartbeat for myself and for my high functioning child. The counter argument from the anti-cure people would be that the difficulties people experience are caused by concurrent learning disabilities, anxiety etc and not by autism per se, and they would argue that if I want to cure my child, I am rejecting who he is. I disagree. Autism prevents him from being who he is, and it’s the same for me. I would choose not to struggle.

I agree!

@TheFormidableMrsC

I was asked if there was a pill that could cure DS. I've heard so many stupid comments I just nod and smile now. I do agree that people are absolutely clueless unless it has crossed their radar with a family member or whatever.

DS is bright, engaging, loves a chat, indeed never stops chatting and is not the "vegetable" some people think he should be. However, early diagnosis and intervention made a massive difference for him. I will always be grateful for that.

I agree. Early diagnosis and intervention has been absolutely invaluable for us. DD was diagnosed at 3, because we had the money to go private, if I'm honest otherwise it would have been a long long wait on the NHS, the NHS diagnosis followed swiftly afterwards only because we already had the private diagnosis so it cut a huge amount of time (years probably). We always knew DD was different, and she was always 'difficult' from birth really, but it was because of the amazing SENCO at her preschool picking up on lots of things that it was brought to our attention that something more was going on. I'll be forever grateful to her.

Because we knew definitely what it was at such an early age we've been able to spend the last two years attending courses and learning/recognising the behaviours that are signs of distress/anxiety/masking etc. We've been able to put loads of things in place to help including having an EHCP for DD just before she started on Reception which gave her access to 1:1 support in school. It was bloody hard work getting it (we applied ourselves directly with support from her preschool) and it cost us a lot (we had to pay for private OT assessments etc) but it was worth it.

Had we still been unaware of DDs autism now, at 5, we'd still be operating on the basis that it was simply behavioural, our parenting, and no one around her would have the understanding that they do. It makes me really sad to think of so many children who receive a much later diagnosis and struggle for years 1) because they aren't fortunate enough to be in front of someone so well educated in the signs of autism and 2) because their families don't have the funds to access private diagnoses and all of the education that can come with that, quickly.

There needs to be much more education in the SEN world of education professionals in autism, particularly in little girls and children who mask. I gave up work to be a sahm when DD was born and my experience has led me down the path where when I eventually return to work I want to retrain (I'm an ex-finance/legal bod so a complete change for me) and work in this area. I never knew there was such a gap for people who can actually help and be so valuable before I became part of this world.

It really worries me how many people, especially girls, fall through the net because parents don’t understand the complex systems or have the ability to fight for everything (and that is in no way at all a dig at any parents simply at the systems which seem intended to trip people up every step of the way.)

When DS was diagnosed at 7 I was told he was young to be diagnosed locally. There was also umming and ahhing because he has other medical conditions which make it harder to diagnosis.

To get the adhd diagnosis 2 years later I ended up paying privately. NHS consultants all agreed he had it but again there was so many delays and he needed medication to be able to cope.

He has an ehcp with full time 1-1 but again I had to fight and shout and scream to get that (thankfully school where shouting and screaming alongside me). So many ehcp aren’t worth the paper they are written on.

Looking after DS is the “easy” bit. It’s the fighting for everything he needs and is entitled to that is the biggest battle.

I agree @Sirzy. I did the EHCP process myself, and as I said I have a semi-legal background which was hugely advantageous because it meant that the enormity of the form filling and documentation was possible for me and it also meant that I could read and comprehend the legislation surrounding the process and understand exactly what we were entitled to expect. It meant that when something didn't happen as it should, instead of being fobbed off I could fight back. I even had the early years SEN teacher from the council shrug things off as 'that's just the way things are'. No, it doesn't have to be that way, but you do need to know how you can pipe up and say 'no that's not good enough' and remind the powers that be of their obligations to your child.

But you know, it's not even that easy to find! It's also not all in plain English, it's quite complex, a bit contradictory in places and for someone who doesn't have my background I can totally see how it would be a huge challenge. DH is a well educated engineer, he's a clever man and half the time he couldn't make head or tail of a lot of it.

Children with SEN are already at a disadvantage, and the current process of diagnosis and seeking an EHCP does nothing to help!

Diagnosis was a complete waste of time for us and has not lead to better services.

Early intervention is non-existent here in my experience.

In the last 2.5 years, my twins have each had six 45 mins SALT sessions. Only one has seen an OT. The EPs assessing them for their EHCPs at 3 told me they had absolutely no idea what they needed in terms of provisions, after I pointed out that their reports didn’t meet the standards set out in the code of practice.

Had I not fought them all the way to tribunal, they would be in a specialist school where the staff have 1 hour of autism awareness training per year.

If I hadn’t applied for the EHCPs myself when I did they wouldn’t be in a school at all.

They are doing so amazingly well in their specialist ASD school - this week one of their TAs came round as she’s going to be helping us out a bit in holidays, and DT1 was so excited to see her. He’s never taken any interest in visitors before. They are doing so well and I am gutted that if they’d just been able to access this from an earlier stage, they’d be so much further along now. All that wasted time and wasted money (i would love to know how much their expensive external solicitor and barrister cost them for 6 months of work).

Early intervention is shocking here too. My DD is 6 with a speech sound disorder, hasn't had an NHS therapy session since February 2019, 7 months before she started school. Finally scheduled one in for later this month.

I don't think early intervention is available here either really, unless you're in a position where you're able to pay for it and then fight tooth and nail for it. Which is completely and utterly wrong, and makes me furious.

As I said DD is in reception with an EHCP and 1:1 support because we were able to do that. There is another child in her class and it is clear she has some additional needs (autism or not no one knows yet but in my non expert opinion i suspect ADHD) and her mum has been told it's a two year wait for CAHMS to even see her to be referred on for anything at all. Luckily we've had nothing to do with CAHMS. When her mum told me, no one had even explained to her that they can actually set the wheels in motion themselves. They were just told school will deal with it and they need to wait.

I've given her all the info I have, but a lot will depend if they can afford to access private which obviously I have no idea if they can. They're now going through the GP too, so hopefully they'll also get seen on the NHS but who knows especially with COVID how long that'll take?!

It’s strange and unfair how the various provisions differ between areas.

My older boy was diagnosed at 5 without any real delay or issue. He presented confusingly so there was some hesitancy but once he got to nearly 5 his presentation crystallised, his diagnosis confirmed.

His EHCP has just come through - applied for in September so a bit delayed - but he got all of the adjustments requested by us and school.

Younger has just received his diagnosis at 3. He’d have had it sooner if it weren’t for covid as we took him about lack of speech at 2 then covid hit. Still the paediatrician saw us virtually, observed him as best she could, I had an appointment as soon as I could and he’s had his diagnosis.

She said she’s starting the EHCP process for us and she’ll check in in 6 months to see its all going.

Why is the provision so patchy and inconsistent? It’s horribly unfair. We’re literally just ‘lucky’ because of the Borough we live in. It feels so wrong.

I would honestly encourage anyone to apply for the EHCP yourself - it’s very easy to apply, you could go to the IPSEA website and use their template and get it done today, and professionals / schools often take ages to get the paper work sorted. The clock starts when they receive the application. I just know too many people who’ve waited so long for professionals to do something they could have done themselves because they didn’t realise.

@SinkGirl

I would honestly encourage anyone to apply for the EHCP yourself - it’s very easy to apply, you could go to the IPSEA website and use their template and get it done today, and professionals / schools often take ages to get the paper work sorted. The clock starts when they receive the application. I just know too many people who’ve waited so long for professionals to do something they could have done themselves because they didn’t realise.

Absolutely agree. It needs to be better publicised that parents can do it themselves and there needs to be more help for parents that wish to do so but may have difficulties in doing so.

You can be autistic and an arse.
(The laptop borrowing autistic person encountered above) We are all human after all and come in all types just like neurotypicals.

I reckon at some point they will find there are different types of autism, like there are different types of Ehlers-Danlos syndrome. That would be helpful I think as autism is such a wide spectrum.

As for a cure? It is difficult to imagine really what cured would be as I have always been autistic. Definitely like to get less pissed off by noise. Not having meltdowns would be nice. Yes I would like to be able to work. Just like I would like someone to cure hEDS/HSD being able to walk further than half a mile would be nice, and being able to stand up without falling over.

You sort of accept these things as who you are and adjust because otherwise life would be too distressing to contemplate.

I do think a lot of he issues are made worse by society though.