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

[ByGrabtharsHammarWhatASaving]

Might be a good chance for anyone here who has or works with children with ASD to raise concerns about the NAS, the links between ASD and GID, and concerns in general about the effect of trans teaching in schools on children with ASD.

Hi, sorry to interrupt the debate (I've not joined in as I have nothing useful to contribute) but as people living with ASD/ parenting children with ASD, it'd be great if a few of you could pop over to this thread and support this poster with her gender confused son with ASD.

www.mumsnet.com/Talk/lgbt_children/3572592-transgender-and-asd?watched=1&msgid=86751376#86751376

I get living with others' autism can be difficult (hell the five of us trigger each other every day) and yes it's hard - I think I found the kids' early years hard because of my own autism too..

It doesn't give you a right to shout down the lived experience of autistics no matter how you diminish their disability.

I have two female friends. Mothers both diagnosed, all their children diagnosed. They definitely are too but can't get that because there isn't currently an adult diagnosis service in our area. The clinician left.

Anyway I'm not going to carry on disagreeing. Please continue to believe I have no idea although I bet I have met, lived and worked with more people on the spectrum than anyone else on this thread. That includes children and adults, with and without communication difficulties both HF and LF.

It's not a bloody competition!! For Christ's sake!!

I find it truly awful the assumptions and way you speak about autistic people.
Yes I find your assumptions and understanding pretty awful too, but I am not trying to top trump you and my experience is as valid as any other posters.

As posted earlier “high functioning” means an IQ over 70. So, it is NOTHING to do with “how well you pass for NT” or “how little your disability impacts others”. I haven’t stated I am nt, or that I am autistic. I haven’t shared the profile of any of my family members. I have a fair amount of experience of autism, but even if I had none at all I would imagine it would be ok for me to say “I worry about this group of disabled people, and the impact of dsmv on them and the impact of self ID on them”.

I am not trying to top trump you and my experience is as valid as any other posters

Nobody has said your experience isn’t valid, just that it is your personal experience and it is limited, therefore you should not have talked over others.

What about my comments on autism or autistic people is awful exactly? Only you’ve not specifically said at any point what I’ve got wrong or what I’ve said that’s ‘awful’ about autistic people. If you’re going to respond claiming that, you should highlight what it is. Otherwise I think you’re just deflecting. Several people have taken issue with your comments, not just me.

I’m sure you go to support groups and see what opportunities are available in your area. No, because there aren't any where I live.

Perhaps it’s just here that more severely impacted individuals are so invisible They are not invisible here. We have a national disability scheme here (Australia) that gives those who are needing it a certain amount of funding per year to access services. The "severely impacted" (your words) get quite a bit, because their autism is tangible, and because they are non verbal/unable to do things independently/unlikely to live alone etc.

I fight each year for funding for my "HF" dd, reports, meetings, emails, letters, dr's letters because she is "HF" and I have to prove beyond a doubt that she is disadvantaged by her asd. They don't take into consideration her debilitating sensory issues that mean that she cannot dress herself without aid at 10 due to the way the clothing feels, or that she can only wear plain leggings and t-shirts in black and blue, or her debilitating anxiety, or the fact that she cannot sleep without meds, that she cannot tie shoe laces or use standard cutlery because her motor skills are lacking. They also don't care that she slams her head into walls when she is overwhelmed. Because you don't get funding for sleep/anxiety/sensory issues/self harm.

To be honest that would be absolutely fabulous to hear about. I'd be happy to tell you about it if they existed!

I'm damn sure an autistic lived experience far trumps yours if you're really going there.

differentnameforthis I am in the UK and our experience with total lack of support for high functioning autism is the same. There is NOTHING and it took 5 flipping years to get a diagnosis, after languishing on the NHS despite a GP repeatedly asking for a referral, our school paid for a private assessment. We get nothing to help her severe anxiety, her extensive sensory problems or her mental health problems that have caused enormous difficulties and affected my life also. I am literally on my own. But I guess that doesn’t matter because I shouldn’t ask for help, even if she’s suicidal, in case it takes away from kids who are more severely affected- as was said earlier in this thread.

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.

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.

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.

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.

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.

@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.

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

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.

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.

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.

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

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

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.

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.

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

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.

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