Review of the National Autism Strategy ‘Think Autism': call for evidence

Right so you consider those who can speak to not have any of the same issues of those who cannot? That's the ignorant bit. Of course we do. We have the same impairment pattern, it's only the expression that differs.

You don’t know what anyone else thinks about your comments.

I will trawl back through your posts if I have time later this evening, are you planning on persuading me I liked what you posted?

I’m surprised that the only reason people can imagine someone would have a differing view to them is that that person is ignorant. I can think of lots of reasons why people think or feel differently to me. I can imagine prioritising MH in the autistic community, or prioritising speedy assessment, I don’t agree but I don’t assume you are ignorant. You are choosing to believe I have some sort of agenda against autistics who are more independent. That I am denying their disability and want to deny their difficulties. When I think about my agenda if I even have one is the invisibility in society of dependent disadvantaged often non-verbal autistics who make up more than half of the population. I know how hard it can be to be an autistic in the uk. (Apologies to pp from Australia I have little if any understanding of the set up or attitudes there, but I do know Australians exclude autistics from their immigration process as do Canadians).

Itwouldtakemuchmorethanthis

You haven’t clarified what awful comments I made about autistic people. Instead you said I was bullying you to ask. If you’re going to accuse me of something, you ought to make it clear what was said or apologise to me. Nobody else on here thinks I have made awful comments about autistic people.

And let's face it @KeepOnKeepingOnAgainandAgain the impairments we have are the same whether verbal or not - to get a diagnosis we all have to have the triad. We just react to our triggers very differently.

Such ignorance and generalisation based on ignorance! We face so much from some medical professionals and NT world but it is shocking coming from the autistic community.

DS2 was referred to SALT at 2.5 for speech delay and still has articulation issues at 13. His primary school insisted on audiology investigation because they thought he couldn't hear. They called in EP when he was 7 because they thought he had LD - although not hearing impaired he ignored his name and instructions and struggled to write at all.

Imagine their shock when objective cognitive assessment revealed him to be on the 99th+ percentile. So they ignored it - didn't compute - and continued to treat him as below cognitive average (he now has a personal budget to attend internet school as brick school insisted that he must be in bottom sets to get LSA support because school doesn't meet the need of 'twice exceptional' DC - today he was laughing at how easy tangent ratio in right angled triangles is and is predicted A* in maths iGCSE next year).

But the visible/audible 'deficits' meant that he ticked the boxes and we never had problems getting an EHCP etc when he was a m/s primary. It 'just' affected his self-esteem etc.

DS1 had no speech issues (beyond selective mutism) but we have had to fight (Tribunal, judicial review) to have his educational, health and social needs met. Whilst DS2 will complete education and get a degree and probably study to PhD, post-doctoral level, work, live independently etc, DS1 was unable to attend even ss school beyond 14 and every day is a struggle to keep him alive. Perhaps there is a connection between lack of early intervention and outcome? Between saying one autistic child 'deserves' support but another autistic child with a different presentation (but higher need) does not?

Unbelievably, the only agency that seems to recognise the needs of chronically anxious HF autistics with no speech delay are the DWP and so DS1 is eligible to receive higher level social care PIP and ESA in the not-expected-to-work group.

I used to post and regularly read the SN boards. There was no conflict between parents with so/called LF and HF DC. The struggles were different but whilst those with verbal and mobile DC struggled with diagnosis, appropriate schooling, tribunal, hearing DC saying they hated you, being told your DC was 'fine' etc, those with non-verbal or mobile DC struggled with constant appointments, SN buggies, never hearing your DC say they loved you, being stared at etc we all shared common experiences and empathised rather than competed with each other.

I’m sorry that’s been your experience BishopBrennansArse.

Life expectancy of 40 (or just under) is not for the whole autistic population (though it is less than the nt population for all autistics), it’s specifically for the group I was voicing concern about.

www.nhs.uk/news/neurology/people-with-autism-are-dying-younger-warns-study/

I love people in both groups.

Personally I'm 40 and I've got 3 attempts under my belt. Chris Packham has 2.

Once again those described as 'low functioning' aren't the only ones in that category.

I’m sorry I’m not saying you aren’t disabled by your autism. I’m saying I am concerned about some autistics having a life expectancy of 40 and that that section of the population is less visible. I am also concerned about MH, suicide rates in the autistic population and if it comes down to it many other issues.

Ooh actually one Ivan answer.

Yes I have a house. I'm married and have kids. There are challenges with all of these due to executive functioning. Also budgeting but not enough to access support.

I've lost a lot of jobs in my time, too.

Yes I can vote. Whoop.

I can't access proper healthcare, no. Because I struggle to express myself in stressful situations and hospital appointments are stressful my physical health has been impacted because an autoimmune condition which could have been picked up earlier if I was able to express myself has now caused significant damage.

But no, I'm not really disabled by my autism am I

Oh and I'm not into the game of who is worse but an illustration. My son who has LD along with his autism is oblivious to what other people think of him. He doesn't care. He has the same triggers as others in the family but is free to express himself when he encounters those triggers in a way that for example me and my eldest son can't because we know other people are watching and judging. I'm trying not to care and unmasking as much as I can for my mental health but years of conditioning and damage are hard to undo.

So I'm not saying it's worse, it's different. Same issues but perhaps more complexity in those some insist on using the prejudicial hfa label on.

Yeah. Let's just throw people's mental health on the bonfire (being undiagnosed for 38 years has been extremely damaging and only now can I protect myself properly)

Obviously someone who has zero clue of how autistic lives are.

Am I supposed to apologise for thinking that resources are limited and that assessment is not what we should be prioritising? .

I didn’t say I was talking about my child.

This constant need to dig into others experience is odd.

Oh is it? Only you kept referring to YOUR child and YOUR experience.

Let’s also look at one of your earlier comments:

Given, but perhaps you could consider what “greatly impact their life” actually means in this context? What for example is the life expectancy of these late to seek dx individuals? Do they live independently? Do they have secondary or beyond education? Do they have spouses, children, jobs? Can they vote? Access healthcare? “Greatly impacted”?

Who is digging?

Bullying? Are you for real? No, you’re being challenged on your words and your disgusting comments about autism that has enraged several posters. You just can’t stop trying to reword things to try and defend yourself, instead of apologising.

Oh and just to be clear, those who are ‘late seeking diagnosis’ have been let down by a system that has always poorly understood autism, has focused on males and therefore many grown women have suffered without help boys would of had, and those with asperger’s who would not be young enough to have had that term around when a child. It’s not like they’ve been happily going about their life with no issues and then suddenly think, hey why not waste peoples time and take resources from kids who need it.

Do you understand that someone who is not ‘visibly autistic’ may be more severely affected than your child?
Yes of course I do, there are MANY people who are more severely effected than my child. I’m not sure WHY how my child presents is important? This constant need to dig into others experience is odd. We don’t need to show our credentials before we speak. I find it quite bullying. I certainly don’t want to be drawn into oversharing in such a hostile environment. I wonder if that’s why so few posters with non verbal or learning disabled children post on MN.

differentnameforthis Thank you. I am really very grateful for my family, I don’t like to make out my life is bad because of them, just that I think I should get more support particularly as I have chronic illness which means extreme fatigue and doing everything for them is physically and mentally exhausting- I can’t work full time for instance. DH we suspect has asperger’s and one psychologist visit did too but only a psychiatrist is allowed to diagnose here I was told ( that could be wrong ) and DH isn’t interested in a diagnosis at his age, he has less sensory issues and learnt to manage his hearing problem so day to day life is ok- he’s never had mental health problems. He literally doesn’t want to take from an overstretched system! He does rely on me a lot though. But our DD definitely should of had help along the way, I think her high intelligence and articulate speech is part of the problem actually. We have paid for private therapy but can’t afford it all the time. I would dearly love for the CBT and stuff like that to be part of what we are offered. I worry what would happen to them if anything happened to me, we are overseas away from the few family we have and my DH has no family as his mum died and he has nothing to do with the rest- they’re pretty mean to him. That’s my concern, not just right now but the future when I’m not here.

articulate possibly autistic adults these are the self IDers I was referring to. I’m sorry if that wasn’t clear to you.

@JessicaWakefieldSV
We saw the "top paediatrician" for autism in our state when we didn't know what was going on for our dd. She presented asd traits to him perfectly, yet he didn't pick it up! Admittedly we weren't there for a diagnosis, and I didn't know what I was seeing really, but looking back she was text book!

We paid privately for her diagnosis, with help form family, because if he didn't pick it, no one on the health service would have either.

We have access to the scheme, and thankfully we have OT and psych for her through a private organisation. But the day they say she doesn't need the funding, is the day we will start to struggle.

I am so sorry you are alone in this. I have dh, and we suspect (am I allowed to say this) that he is autistic (granted, dd's psych agrees) so when dd melts down, he gets triggered and I need to deal with him too. He is far to stubborn to do anything to help himself.

Please don't let anything on this thread upset or affect you, EVERY child/adult should have access to help and intervention.

What I said was that I wouldn’t be focusing my energy or resources on making assessment more accessible to adults who self ID. Because I think there are people who need that energy more.

No you did NOT! I am getting sick of you rephrasing what you said and claiming you didn’t say what you clearly have. This is the initial part where you entered the conversation:

itwouldtake I do see your point. I guess the solution is to push/campaign (as jessica says below) for better understanding/diagnostic services for adults in particular.

so basically focus resources (time/money) on the able articulate possibly autistic adults to make sure they are well catered for and then perhaps anything that you have left can be used for the autistics. Why?

You followed with this term: those more visibly autistic and severely disabled.

Do you know the term invisible illness or disability? Do you understand that someone who is not ‘visibly autistic’ may be more severely affected than your child? Or do only obvious physical disabilities matter to you? We were discussing DIAGNOSIS. This is the first step to understanding, to support and to a potentially better life. Nothing about taking resources from anyone else.

I’m sure there are tons of people who take issue with what I’ve said and what you have.

No one other than you has said to me that I have made awful comments about autistic people. Which comments please. Specify.

What you said earlier when myself and others were talking about ourselves advocating for more resources to deal with referrals and assessments, was that you would not focus on that over people more severely affected, not that anyone asked you to or that you or ourselves could possibly know how affected undiagnosed adults and girls are! You proceeded to question how affected articulate autistic persons who had a job etc could be. Nobody told or even suggested to you what you should focus on, not once. You came on to tell us that it would take away from your child and children like them who you claimed were more severely affected. So I’m not sure why you are now trying to claim something totally different happened in this conversation, you have not allowed others to discuss what they’d advocate for without jumping in and saying it was taking from others, and you have not been told what you should do- despite claiming it several times. Several posters have also said we can campaign and work on more than one issue at once. Nobody said to only focus on this one thing.

Nobody has said HFA shouldn’t be supported or asked for help. What I said was that I wouldn’t be focusing my energy or resources on making assessment more accessible to adults who self ID. Because I think there are people who need that energy more.

There is nothing wrong with what @JessicaWakefieldSV has written. If there was, people would be debating with her, but they are not.

I think that you mean well, but your written words aren't coming across that well, regardless of your POV. Otherwise, so many of us wouldn't have issue with it.

I’m sure there are tons of people who take issue with what I’ve said and what you have. My point really was that you may feel you are reasonable and your interpretation of others posts is definitive but probably most of us do. We are ALL posting from our particular experience. I haven’t “talked over others” and everyone has equal access to post as they see fit. I’m happy to for you to have a very different take on what is important to focus on in the autistic community. I’m rather less happy not to be afforded the same respect.
I have not suggested any posters dx, experience, intent. I’ve voiced my concerns about an ever more marginalised group within the autistic community.