Autistic Mummy

I had a hard conversation with a SaLT yesterday. Chat in prep for interview and clinic visit for my youngest’s #autism assessment. #ActuallyAutistic #ND #autistic #AutismDx 1/

@beccajiggens Both of my kiddos were dxd at age 4, so they apparently get to stay in the ‘club’. And yet I’m still being told they’re ‘too competent’ to be autistic & disabled. As you say, utter BS & incoherent.

As a woman who got diagnosed with Classic Autism in the "extreme male brain" period, this is utter bullshit. I mean, not that you'd expect anything more from the right wing stable of angry failed academics on disability.

Lorna Wing pioneered spectrum concept & also presented camouflaging hypothesis for girls (1981). She worried autistic females "may continue to go unrecognised or misdiagnosed" in DSM-5. sciencedirect.com/science/articl… Suggesting autistic women are simply hyper-emotional is classic sexism

We know of at least one family that has waited a year for the needs assessment to be completed, and it still hasn't gone to panel. @BristolCouncil what are you playing at? #EHCP #SaveOurChildrensRights

This is utterly shocking. Bristol Labour Councillor Susan Kollar is basically telling families that they need to be patient for their unlawfully delayed EHCPs. I’m stunned #send #ehcp #bristol #disability

@cix_stormrage Absolutely. So many late diagnosed that has nothing to do with ‘not being autistic enough’ it’s us (professionals/society) not recognising it early. Wishing the best for you and your family.

She’s now out of school completely and we are dealing with the stress of GCSEs and how much she can cope with. Yes, she was late diagnosed but I think that was a failing of those around her. She is sensitive, has social communication issues and anxiety relating to overwhelm.

This is going to be long and probably won’t get read but here goes. When my d was a baby (and indeed now) she was very attached to me. She had reflux and was taking PPI. She never really slept, didn’t take to strangers well. They would peer into the pram and she’d glare at them

Let’s not forget that the revised Mental Health Act should make it harder for autistic people to be detained under s3. Frith’s words will just make it easier for some psychiatrists to justify removing a person’s autism diagnosis. Vested interests are crawling out of the woodwork.

@Dmdav1 @milton_damian Incidentally, the ring leader of denying ME is Sir Simon We$$ley, now heavily involved in denying ADHD & in the incredibly weak position (sarcasm) of being on the board of NHS England.

@Dmdav1 @milton_damian Reminds me of the discourse around #MEcfs. Patients (v ill & vulnerable & majority women) painted as controlling narrative & silencing/abusing/threatening good faith (bad faith, eminent, powerful) researchers who claimed their (physiological) illness was psychosomatic.

Dear me, where to start?

@KBGreyhoundlady @Cyberbloke @BenKentish @DrRobBedson You mean you just weren’t aware of it. My dad receiving corporal punishment & regularly getting into low grade trouble for things he could do nothing about was one. I dare say you wouldn’t have realised even if you were in his class. His sister hid it better.

@Cyberbloke @BenKentish @DrRobBedson Im 69. I don’t remember that. I think you are making this up

32 experts from across the UK have published a detailed scientific paper this morning concluding there is “no evidence that ADHD is over-diagnosed in the UK”. No doubt all the Westminster career politicians who insisted recently that it is (without providing any evidence whatsoever) will now be issuing apologies….

SEND-sceptic educators retweeting an opinion piece about autism because they think it gives them permission to ignore EHCPs

You'd be amazed at the number of Employment Judges who decide that although X is a common consequence of autism, that the specific autistic claimants before them exhibit X but not because of autism so that unfavourable treatment because of X isn't unlawful.

@blackthugcat @realdoll03 @naomicfisher initially & superficially as being ‘too competent to be autistic’ 5/

@blackthugcat @realdoll03 @naomicfisher Our shared experiences, the similarities in our ways of being, thinking & understanding of the world & people in it, was all the more striking for our apparently very different levels of ‘functioning’. We both recognised each other as autistic, although he judged me very 4/

Uta Frith, renowned autism researcher, gives an interview to the TES about autism – and the internet goes wild. We’re told that what she said will put back progress 40 years, that she knows nothing about autism, that she lacks critical thinking and that her words will harm autistic people to the point of suicide. You’d guess she must have said something really awful. Perhaps something deeply offensive about autistic people which reveals her lack of compassion and understanding. Even then, it’s hard to know how one retired academic would have the power to make others commit suicide and to turn back progress to the extent that is predicted. What she said was that she thinks the autism spectrum has expanded too far and that it isn’t helping anyone. Not those who originally received autism diagnoses, and not those who are now getting diagnoses who previously would not have done. She said that she thinks scientific progress is being held back because ‘autism’ now means something so heterogenous that we can’t identify anything that all autistic people share. Nothing biological or neurological, nothing cognitive, nothing behavioural. In her words, there are no markers. The autism spectrum is, in fact, the widest spectrum imaginable. It goes from some of the most disabled people in our society to some of the highest achievers. And there’s no evidence that they have anything in common except their diagnosis. Saying this sort of thing gets you into a lot of trouble online. There are accepted narratives that we are all expected to comply with, and one is the idea that the giant autism spectrum is protective, that it helps people to be included under one diagnosis. Any language which helps people differentiate is banned. Which is odd, because we don’t think that in any other area of medicine. No one says (for example), that we shouldn’t differentiate between Type 1 and Type 2 diabetes because it’s protective not to be able to talk about the differences. It’s obvious that differentiating between types of diabetes will lead to better understanding and interventions. If you don’t comply with these narratives about autism – as Uta Frith hasn’t – then you will be publicly shamed. Your expertise will be challenged, even if you have 60 years of experience. You’ll be told that you are harming people and that you are ignorant. Personal slurs are likely to be used against you. And it’s all about social control. Shame is about social control. It’s about creating things that can be said, and things that can’t be said. Others see the shaming and keep quiet. It’s about controlling the narrative so that real discussions can’t be had. I’ve talked to so many clinicians who raise these concerns with me and who then say that they’d never speak up, for fear of shaming and even losing their job. There are important things that are not being talked about, for fear of the repercussions. To my mind, the interesting question is really why. Why is it treated like blasphemy to say that the vast autism spectrum may no longer be fit for purpose? Why are we not allowed to discuss the reality of clinical practice? Why are personal attacks the go-to when scientists disrupt the prevailing narrative? And why are we all so compliant, censoring ourselves to avoid the discomfort of shame? Listen to our podcast with Uta Frith here. open.substack.com/pub/neurosense…

@blackthugcat @realdoll03 @naomicfisher at home in private that no one sees. We comfort, we counsel, we remove stress, we communicate without spoke. Language, we scaffold, we hold through meltdown & shutdown, while outsiders call them ‘characters’. It’s not a different conversation. 2/

@blackthugcat @realdoll03 @naomicfisher No, it’s not a different conversation. What do you mean by ‘mostly function independently’? ‘Mostly’ is doing some heavy lifting here. I’m sick of ppl (teachers) telling me how my kiddos are functioning well. Our lives revolve around picking up the - very broken - pieces at 1/