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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think autistic children with needs affecting their day to day life should go to the top of the waiting lists?

369 replies

orangeleopard · 17/09/2024 07:52

As The title says, children who’s needs are severe enough to impact their every day life to an extent that they need help urgently should be put above all of the other children on the waiting list that ‘may’ or ‘may not’ be autistic. My son is in primary school and only able to do half days due to his additional needs, but is told to ‘just wait’ to have his initial appointment with a pedestrian. He hurts himself and others on a daily basis. He doesn’t sleep until midnight/1 each night as he’s so hyperactive. He has severe meltdowns that sometimes lasts hours. He cannot speak properly and has also been waiting years for speech therapy. He is a severe flight risk and runs as soon as he has the opportunity to. He also has no sense of danger and injures himself on a daily basis. His day to day life is affected so severely , as is mine as a parent and he needs severe help yet is told to just ‘wait’ for his assessment to get diagnosed and help. Yet there are children on the waiting list who yes, deserve to have an assessment but needs are not impacting their day to day life as severely- ie they can attend school ‘normally’.

am I being unreasonable to think children like my son should go to the top of the list and that the list should be based on need

OP posts:
lololulu · 17/09/2024 13:09

I waited 2 years for my assessment.

My daughter has waited 3 years so far.

I don't want to wait much longer.

Lougle · 17/09/2024 13:16

Foxesandsquirrels · 17/09/2024 11:50

@Ohfuckwhatdoidonow EHCPs, like DLA, are bases on need not diagnosis. One child with an ASD diagnosis may have an EHCP, whilst lots of others won't due to it being based on need.
What you need to evidence for a EHCNA is to show that your child may or may not have SEN. That's the only test in law they need to pass. You can apply for it yourself and when your LA inevitably says no, as it does to most applications, you appeal it (very easy, paper hearing). Most LAs are completely overwhelmed and decline almost all EHCNAs, it's a big reason the appeal success rate is something like 97%.
Ask your school to provide you a list of interventions they've already put in place, how they've spent the £6k for Sen and go from there.

"What you need to evidence for a EHCNA is to show that your child may or may not have SEN. That's the only test in law they need to pass."

That is not the case. The legal test is that 1. whether the child or young person has or may have special educational needs (SEN) and 2. whether they may need special educational provision to be made through an EHC plan.

A child has to meet both criteria to be qualify for a needs assessment.

But I agree that the bar is low, and much lower than most LAs would like you to believe.

Foxxo · 17/09/2024 13:19

oakleaffy · 17/09/2024 12:24

@YoucancallmeBettyDraper

''I think there should be a range of triage criteria one of which is violent behaviour towards other family members.''

Absolutely agree.

Once a child becomes big and strong and a physical danger to family members, outside help and care is absolutely needed.

A mother {the Dad cleared off} was put at serious risk of harm {of the worst type} by her teenaged child - When the same thing happened again, she knew she might not be so lucky next time- and her young adult child is now in a specialist place where he will probably stay for the foreseeable future.

Re the triage criteria for violence, i don't know if it applies these days, but i was told back when my son was going through it.. would have been ,2015ish that those on the asd/adhd waiting list who were violent WERE seen before those who weren't.

I recall because when we started the process, DS was not violent, then when he was 8 a switch flicked and he started attacking me during his meltdowns, we had to report the change and it bumped us up the list.

I do not know if that is area specific, or even if they still do that, but they did 8-10 years ago.

x2boys · 17/09/2024 13:29

nicknot · 17/09/2024 10:20

Do people really still think that people filling a form that completely contradicts school/nursery without any supporting evidence and get awarded DLA?

God I remember thinking how utterly stupid my Dad was when someone we know had a kid get an ADHD diagnosis and he thought they were 'doing it for the money' - that was 25 years ago!!

Fucking crazy people still think like this

I know they won't get anywhere, but it doesn't stop people trying as I have said I see it daily on the DLA groups I'm on ,and they are always furious with the school / nursery for not backing them up.

ZombiePlanet · 17/09/2024 13:58

My uncle is almost certainly autistically and has never been diagnosed. He still lives with his elderly mother. She manages his finances and makes sure he clothes himself etc etc. He managed to get through school and he had a job briefly. But thats it. He and his mother refuse to address this. This means the burden is likely to fall on my father in an ugly mess when my step grandmother dies.

There was a thread earlier this week regarding adults who can't live independently who live with elderly parents and there were a number of posters who said how this affected their family in the absence of a diagnosis. It make the whole process of getting adequate support a lot harder.

There are also implications for certain situations - such as being arrested or going into hospital.

A lot of autistic people might generally be able to 'cope' to a point, and to an outsider look like they are able to function and don't need additional support but there a lot of situations where this is not the case. Even for 'mild' autism.

There is a massive range of needs. But the key point is they remain needs.

A failure to support those needs has massive implications for society as a whole.

Absolutely this, @RedToothBrush . Once upon a time stuffed away in asylums in obvious cases, and the rest left to flounder/ be homeless/ commit suicide/ rely immensely on family to fill the gaps in private, at immense cost to them.

My father, now 78, is very obviously autistic. He has been very successful academically and financially but has pretty much no relationship with any of his children, ruined his life with alcoholism attempting to cope with its demands and now has a wife who controls and manipulates him to the extent that she has convinced him not to have cancer treatment so he will likely be dead in the next year or two.

My brother is also incapable of family or emotional relationships due to the trauma or living through school and early life with no diagnosis. Again extremely intelligent, now very successful financially but cut off from everyone, living a very insular life on the other side of the world and trying to recover from alcoholism from self-medicating.

As for me, much as the recent studies that weren't available when I was an undiagnosed child living in hell state, I was subjected to all of the vastly heightened risks they set out for autistic girls with no learning disabilities, who can mask and whose support needs are therefore dismissed and ignored. I was sexually abused by my step father, made homeless by my mother and him at 16, obviously my father and his controlling wife were unwilling to help, left to fend for myself.

I excelled academically, all A stars and As despite all of this, but had no help from police or social services even when covered in bruises because I was articulate and seemed "fine". Once left alone to fend for myself and pay rent while still school aged and live in a slum I was raped several times, attacked, spiralled into drug abuse and alcoholism myself for a time. A GP sent me back to my flat where I lived alone as a minor with prescription medication never licensed to give to under 18s that has subsequently been banned entirely because it caused suicides. I tried to kill myself multiple times.

I have dug my way out, very slowly. I worked and studied and worked and studied and now I earn a six figure income because at least I still had my academic abilities to get me out of this situation. But the heightened risks that autistic people are faced with, the discrimination, and the effects of this cause lifelong harm.

My mental health will never, ever recover from what happened to me and how I was treated as a child, even with long-belated trauma therapy, not just by my "parents" but by school staff, social workers, etc. There was no support at all. Being intelligent and not wearing nappies and able to speak didn't save me from harm. My support needs had nothing to do with my academic abilities and my support needs were ignored.

I am doing everything and anything to fight this discrimination against very vulnerable autistic people, for my own children and others hence comments like the disgusting ones on this thread will be called out by me every time I see them. I am lucky I am alive at all, and I do everything in my power to ensure children like I was, children like my daughter, do not have their vulnerabilities and support needs minimised or ignored just because they are intelligent and can speak. The latter has no bearing on the former and I won't sit here and listen to the kind of horrific comments we've seen here, yet again, trying to minimise the needs of very vulnerable children because their vulnerabilities aren't so overtly obvious.

Guess what? The studies show that this makes them even more at risk, because nobody thinks they need any help until it's too late.

I am lucky I did not die, on several occasions. My own children obviously won't be subjected to abuse in their home as I was, or being homeless as teenagers. They are protected and loved beyond belief. But I also won't let them be subjected to the abusive and discriminators behaviour I endured from social workers, school staff or random members of the public, either. No matter what love and security I provide it will not be enough to mitigate the impact on them if they are continually subjected to damaging and discriminatory behaviour even at school: a place whose sole purpose is to help children to thrive.

Perhaps those so certain of their "opinions" about such things should realise that they know nothing of the life experiences of the many different people with what they disparagingly want to call "mild autism" and should keep their "opinions" to themselves.

ZombiePlanet · 17/09/2024 14:14

I didn't understand any of it. Nobody had ever explained that your family treating you like this wasn't normal. It took me until my 20s and seeing more of other people's families before I could comprehend what mine had done.

Nobody helped me to understand anything. I didn't know about social relationships or how men prey on young women. I was getting straight As at school despite all of this happening and living alone but had no idea about the predators by whom I was surrounded or that what they were doing was wrong. I thought these people were being nice to me because they seemed kind and nobody had explained to me that people lie. I just knew I wanted to die, so tried to several times.

With diagnosis and proper support my life would have been very, very different. Being compliant at school and academically bright does not mean a child is less in need of help and protection for the vulnerabilities arising from their disability.

On average, an autistic person's emotional age/ understanding is roughly 2/3 of their actual age. So I was effectively an 11 year old living alone.

But even with the best family and specialist/ medical and school support via and EHCP this is why autistic children are so vulnerable. Effectively you have 11 year olds in classes with 16 year olds (emotionally and socially, while they may well far exceed the NT kids academically). You have NT 11 year olds starting school with the autistic children who are still 7-8 years old in their social understanding. They are SO vulnerable and therefore have very high support needs in these educational environments designed for NT children regardless of how good their masking is. Their masking puts them more at risk and means they need MORE support, not less, because of the mental health impacts of masking and because ignorant people use the masking as an excuse to ignore their support needs and make them cope alone, until they can't and they either collapse or die.

Ems1992 · 17/09/2024 14:18

StaunchMomma · 17/09/2024 11:13

It wasn't 'cheap' and it is absolutely valid!

The clinic we chose AFTER LOTS OF RESEARCH actually takes on NHS patients for diagnosis in that area and meets the same standards, but well done on being part of another big problem in autism awareness currently - that of doubting diagnosis!

To back you up here - I work in MH services and the consultant in our team has set up a private autism assessment service. He has over 30 years experience, has formally done autism/adhd assessments within the nhs and he charges less than £1000, this is because he also has neurodiverse children and wants to make a service accessible for families.

Cost absolutely does not come into the validity of a practitioner if you do your research.

Ohfuckwhatdoidonow · 17/09/2024 14:29

Ems1992 · 17/09/2024 14:18

To back you up here - I work in MH services and the consultant in our team has set up a private autism assessment service. He has over 30 years experience, has formally done autism/adhd assessments within the nhs and he charges less than £1000, this is because he also has neurodiverse children and wants to make a service accessible for families.

Cost absolutely does not come into the validity of a practitioner if you do your research.

Would you mind sharing this consultant's details please? I'm struggling to find a private service where I can get my son assessed. £1000 would be a massive bonus on top of finding someone!

Even if just via PM I would really appreciate it. Thank you I also understand if not

Bushmillsbabe · 17/09/2024 14:31

PivotPivotmakingmargaritas · 17/09/2024 08:31

YABU… Why is he waiting for an initial appointment at primary school?!? My daughter is 2 and we are waiting to see someone. Have you delayed seeing someone to see if he “grows out of it” and then hit the panic button and now expect to jump the queue. Why wasn’t he on the waitlists years ago ?

Many children's needs do not become apparent until they are older. My daughter is year 4, one friend has just received an ASD diagnosis, and one an ADHD diagnosis, after being on wait list for 2-3 years, their needs didn't really become apparent until in year 1-2. I appreciate this is because they needs were less obvious (I know the terms milder is no longer being used by ND commuinity as its felt that their needs are more circular than linear as previously thought), but it's unfair to say that a child who is diagnosed later is due to parents not being proactive.
My youngest - we think she may be ND, but are making the choice to wait before seeking a diagnosis as there may be other reasons for the behaviors she is presenting with, and she may just need time to mature, she is being brilliantly supported by her school within their universal provision. We don't expect to queue jump.

Foxesandsquirrels · 17/09/2024 14:40

Lougle · 17/09/2024 13:16

"What you need to evidence for a EHCNA is to show that your child may or may not have SEN. That's the only test in law they need to pass."

That is not the case. The legal test is that 1. whether the child or young person has or may have special educational needs (SEN) and 2. whether they may need special educational provision to be made through an EHC plan.

A child has to meet both criteria to be qualify for a needs assessment.

But I agree that the bar is low, and much lower than most LAs would like you to believe.

Which is why I said:

"Ask your school to provide you a list of interventions they've already put in place, how they've spent the £6k for Sen and go from there."

It's easier to say this than simply post the law as most parents won't know how to prove their child may need provision through an EHCP. Parents are overwhelmed with the system and you have to give support and advice in manageable chunks. Quoting too much of the law often freaks them out, a practical suggestion is much more helpful. That person doesn't necessarily need an explanation why I told her to do that at this stage. Knowing that all they need to do is show their child may have Sen, and then telling them what they need to do practically is more helpful.

Ems1992 · 17/09/2024 14:41

Ohfuckwhatdoidonow · 17/09/2024 14:29

Would you mind sharing this consultant's details please? I'm struggling to find a private service where I can get my son assessed. £1000 would be a massive bonus on top of finding someone!

Even if just via PM I would really appreciate it. Thank you I also understand if not

Let me try to find the details (we are in East Yorkshire) I am currently on maternity leave! I will message you.

Bushmillsbabe · 17/09/2024 14:46

orangeleopard · 17/09/2024 09:31

I’m going to answer some of your comments but this really stuck out to me. My son is about to turn 5. He has been waiting for speech therapy since he was 2ish and waiting to see the paediatrician for almost 2 years. I didn’t ’wait to see if he grows out of it’, I’m a first time mum and who admittedly when my son was a toddler had no knowledge of autism and adhd. I got told by the health visitors and medical professionals that he’s young and his ‘behaviour’ may be ‘normal’ toddler behaviour and to see if it is or not. When his ‘symptoms’ got worse and he got older the health visitors noticed and stepped in and it really came to light when he was in nursery and the health visitors and school and all professionals involved came together as they realised something was really ‘wrong’ and he needed help. So yes, he has been on the waiting list for years. My area is so backed up with appointments that he has also been awaiting ENT for almost 2 years as he has sleep apnea, swollen tonsils and adenoids and is a mouth breather - but again, we are being told to just ‘wait’. I guess I’m frustrated as every part of my sons life is impacted by all of his medical needs and is not getting the support he needs as the waiting lists are so long.

As for going private, I’m a single disabled parent. I cannot work due to my chronic pain and if I was able to, my son only does less than 3 hours of school a day so I’m not able to work anyway (if he does longer, I get a call to say to pick him up as he cannot cope or has injured himself and needs to go to hospital). So paying private unfortunately isn’t an option.

I’m aware I came across as a bit of a self centred b*h and I don’t think my son is more important than any other child waiting. I understand masking is an issue - and admittedly masking children can be more in need of help as it can lead to mental health issues - I do understand that. It’s just horrible watching my son not be able to live a life ‘normally’ and not getting any kind of support. I’m also struggling myself, as a single parent I don’t have that break and I have to manage his many meltdowns a day, including being hit constantly, being afraid when we’re out that he is going to bolt and run into the roads etc. I have to cope with him sleeping at midnight/1 in the morning each night then dealing with him waking up in the night, then having to wake up at 6. I’m exhausted, I cannot imagine how horrible it is for him - I watch him cry each day over minor things and getting himself worked up to the point where he doesn’t know what to do so he lashes out either at others, himself or destroys items in our home. His ‘meltdowns’ can last hours and it’s soul destroying not knowing how to support him - I guess what I’m trying to say is I have no support on how to aid him, I’m just kind of left watching him struggle.

I don’t want to come across as dismissing other children, every child is entitled to medical care and support. But when you watch your own child struggle every day is a heartbreak not a lot understands and being a single parent to a child with severe sen, I guess I’m just crying out for some kind of help and support that no one is giving us .

Sorry if this has been asked already, but have you considered self referring to social care. In our area they help with funding carers for respite, and specialist play schemes in school holidays, just to give you a little break.

Kirstay · 17/09/2024 14:50

ZombiePlanet · 17/09/2024 13:08

Have you actually read his diagnosis reports? The significant impact threshold does not just apply to social/ communication issues, but all of the three areas of diagnostic criteria. Diagnosis should not be made unless there is evidence of a significant impact in all three. Why did he seek diagnosis if he didn't think there is a significant impact on him? And then seek diagnosis for your son as well if you don't believe he is significantly impacted?

Obviously yes it involves a level of judgement but so does the diagnosis of many other medical conditions. Criteria are clearly set out and a multi-disciplinary team evaluate extensive evidence and perform detailed assessments across the multiple diagnostic criteria before deciding whether the "significant impact" criteria is met. As I said, I do not know your family and haven't read their diagnosis reports but it would be extremely strange - a huge coincidence - if there had been malpractice in the cases of both your ex and your son and all of these different doctors and specialists had mistakenly concluded in both cases that there was a significant impact on each of them when there isn't.

I also find it odd that as someone with an autistic son (and ex-husband!) you posted to say you took exception to me mentioning the "significant impact" threshold for diagnosis as though it was something I'd made up when it is a critical part of the diagnostic assessment, as presumably a parent of a diagnosed autistic child would know this because they'd have thoroughly researched the condition and what the diagnosis means, the very first step of which would have been to look up the diagnostic criteria which state this "significant impact" threshold. So I find your posts quite odd and confusing, to be honest.

I never said you’d made it up. I know it is part of the diagnostic criteria, what I was taking exception to was (and is) the broad brush in which it is being applied. I ask again, who determines what significant impact is? The clinician(s)? The autistic person?

My ex (and son) do not struggle with self-care or daily living. Yes, these may have taken longer for them to learn, but they don’t have issues with them now. I have made sure my son doesn’t struggle with daily living by ensuring he follows hygiene routines, being expected to help out in the house and do chores etc. Like any other child would be expected to do. For example, my ex used to struggle with smells and changing the bin, but he was forced to do this by his parents, and now does it as routine with the help of opening windows. I do worry that modern parents may be restricting their children by blaming autism, or sensory issues, or ADHD rather than expecting them to get on with it or learn ways to adapt. So whilst there may have been impacts in his earlier life, he has overcome most of these challenges by learning ways to adapt. Really, my exes only issues now are social issues which he accepts as part of his autism. He lives independently, maintains a career and relationship with his son. The diagnosis came from wanting to show our son that being autistic is fine. It also gave him validation that how is he is fine (being solitary for example). He would totally reject the idea he is significantly impaired.

When I first pursued the assessment, my son didn’t meet the criteria from the school questionnaire but did with the home questionnaire. In the conversation after diagnosis, his clinician said that the diagnosis is really just for his self esteem and won’t open up much access to support as he doesn’t need it. I mainly got the diagnosis as he may need it in the future and it tells him about himself. It was private, £2000, he was rejected by CAHMS as he didn’t meet their threshold for severity. Again, it’s this question over ‘significant impairment’ and the subjectivity with which it’s applied.

CautiousLurker · 17/09/2024 15:04

Ems1992 · 17/09/2024 14:18

To back you up here - I work in MH services and the consultant in our team has set up a private autism assessment service. He has over 30 years experience, has formally done autism/adhd assessments within the nhs and he charges less than £1000, this is because he also has neurodiverse children and wants to make a service accessible for families.

Cost absolutely does not come into the validity of a practitioner if you do your research.

We ended up going to a similar service - Berkshire Psychology (originally a married couple, one a clinical psychologist, the other a psychiatric nurse, both CAMHS, one ND with ND children). We had to travel an hour to see them, but after languishing on our CAMHS list (not in Berks), we were desperate. They came recommended by parents at a local school specialising in educating SEN/ND kids. Went back to them recently for my son, so they seem to have been going for 8-10 years now.

ZombiePlanet · 17/09/2024 15:05

@Kirstay the "significant impairment" of course is the judgement the doctors and other specialists make based on early development; medical records; reports from parents/ carers/ school; detailed assessments from psychologists, neorodevelopmental consultant doctors, occupational therapists, SALTs; and their own detailed assessments using standardised testing techniques such as ADOS to ensure consistency across different clinical/ medical teams. Just like with pretty much any other medical diagnosis there may be differences of opinion over very borderline cases. That doesn't invalidate the process.

For autism usually it is far more thorough than for many medical conditions where a single doctor can diagnose or not, due to the multi-disciplinary approach to autism diagnosis with numerous different doctors and specialists involved, each providing their own individual assessment on different aspects of the condition and then the diagnosis being made or not based on the data set as a whole.

Most of your latest post seems to be about the extent to which their autism affects you and what you perceive would be "normal functioning" from them externally, rather than how they feel it impacts them or the effect on them both. Given the way you've spoken about it here I wouldn't be surprised if they both hide a lot of the impact of their autism from you because they know you won't understand or accept it and just try to normalise their experience and minimise it. But I may be wrong, it may be just the strange way you've spoken about them both without any empathy.

If you have concerns about their diagnoses or how the doctors and other specialists involved reached their conclusions I'd suggest going back to them and asking to discuss it so they can explain to you how the diagnositic criteria apply in your family members' specific cases. Nobody on this thread can give you that information because we have never met your family members or read their diagnosis reports.

scotstars · 17/09/2024 15:10

While it is awful to watch your child struggling YABU I'm afraid. There has to be a fair system to access specialist appointments- if the system you would prefer operated all that would happen is people would be embellishing their child's difficulties to jump the queue meaning many more children would be waiting even longer.

Pantaloons99 · 17/09/2024 15:11

They can't get assessments sorted as it is- they'd never be able to prioritise before assesment.

The system is currently appalling beyond words. Even with the Headteacher making it clear they felt my child was Autistic, and all my info, our request to assess was denied.

I paid in the end. It cost us £2000. This is the more expensive end. We had a very detailed assessment.

Kirstay · 17/09/2024 15:15

Tony Atwood, who is more of an expert on autism than anyone on Mumsnet, has stated many times that autistic people can and do change, and in some cases, even develop so that they no longer fit diagnosable criteria! I can’t remember the exact percentage, I will have to dig out his book, but he has stated categorically that he has met patients that were diagnosed and met the criteria when they were children, but no longer do in adulthood. I am sure it was around 15%, maybe more.

ZombiePlanet · 17/09/2024 15:25

Also @Kirstay "overcoming" an aspect of a disability doesn't mean it doesn't exist. It means the person has learned coping mechanisms to mitigate the impact, or managed to adjust their lifestyle/ work to reduce the impact and pose fewer challenges for that aspect of their difficulties, or that appropriate support is in place to mitigate the difficulty somewhat.

For example, schools often put SEN support in place after a prolonged battle, then when it has the intended effect and makes the autistic person more able to cope they say "see? They are fine! They don't need support!" even though it is the support that is enabling them to cope (obviously) so take it away again, then they can't cope, then the cycle begins again from scratch.

Same with Local Authorities.

And an adult having finally learned ways to cope so you don't see the struggles (especially as an ex-wife!) and carved out a life that suits them so they can manage doesn't mean their autism magically doesn't exist anymore. It just demonstrates that environmental factors and a lack of appropriate support/ environments can hugely exacerbate the difficulties arising from autism and that autistic people need intensive support to learn coping mechanisms, understand their own profile of strengths and difficulties, be given the tools and help to learn how to cope with the difficulties and design an appropriate lifestyle that is manageable. If they receive this and therefore seem "fine" it doesn't mean their autism diagnosis was wrong! The whole point is that following diagnosis adjustments should be made for them so that they can achieve this.

ZombiePlanet · 17/09/2024 15:32

Kirstay · 17/09/2024 15:15

Tony Atwood, who is more of an expert on autism than anyone on Mumsnet, has stated many times that autistic people can and do change, and in some cases, even develop so that they no longer fit diagnosable criteria! I can’t remember the exact percentage, I will have to dig out his book, but he has stated categorically that he has met patients that were diagnosed and met the criteria when they were children, but no longer do in adulthood. I am sure it was around 15%, maybe more.

A lot of his conclusions are hugely problematic and many have been debunked by subsequent research. But yes, with appropriate support and adjustments many autistic people would be able to function much better. If they don't receive that and trauma and mental health difficulties and isolation qre piled on to of the autism obviously their outcomes will be very different. Hence putting the resources into early diagnosis and intervention, appropriate support in mainstream schools for those who can manage it with that support (and without parents being forced to fight for it for years) and sufficient special school places for those who cannot would benefit not only autistic people but also wider society: more productive adults emerging from education, more tax money, less state dependency, fewer demands on the NHS through crisis later which would not have arisen with this much cheaper early investment, more money left to support those who could never have lived independently even with help.

It is a completely false econ

Bushmillsbabe · 17/09/2024 15:33

Kirstay · 17/09/2024 15:15

Tony Atwood, who is more of an expert on autism than anyone on Mumsnet, has stated many times that autistic people can and do change, and in some cases, even develop so that they no longer fit diagnosable criteria! I can’t remember the exact percentage, I will have to dig out his book, but he has stated categorically that he has met patients that were diagnosed and met the criteria when they were children, but no longer do in adulthood. I am sure it was around 15%, maybe more.

I think this is a really good point, and hopefully people won't jump on your comment, saying 'autism cannot he cured'. As this isn't what you have said. It's a disability, and with many disabilities, treatment and management strategies can help some people overcome some of their challenges. A bit like my arthritis - with medication and therapy I can be active and I would no longer meet diagnostic criteria as my joints are no longer very swollen and my blood tests look fairly normal. But that doesn't mean I'm cured, it means my disability is supported well enough for me to be able to walk, to work, to look after myself.

Foxesandsquirrels · 17/09/2024 15:39

@Kirstay I'm not sure what point you're trying to prove or that man so I'm sorry if this is out of line but surely you don't think someone who has their needs met, therefore can function, is no longer autistic?
Just because someone gets a cochlear implant doesn't mean they're no longer deaf. I also function very well with my glasses but if you took them off me it would actually make me very very unsafe even though I'm not blind I'd probably burn myself or cause a serious car accident. If someone has been given enough support to function, it doesn't mean the underlying difficulties aren't there anymore. This is a big problem behind diagnosing people based on severity of symptoms. We've become a lot better with diagnosis but the terminology hasn't caught up.
So many stage 4 cancer patients have no sign of disease due to the excellent medicine they now have, yet they're still classed as having cancer. Because without that medicine they wouldn't be able to survive. I don't understand why we can't look at SEN the same way.

ZombiePlanet · 17/09/2024 15:41

Sorry...

a completely false economy to deny this early support to all children who need it. It pays significant dividends later on to do it properly, not just to them but to wider society and the economy.

Frankly, without autistic people the rest of the population would probably still be living in caves and trying to figure out how to light a fire. Yet we're all still treated with such disrespect. Some mutual recognition would be good. Nobody would invest in my future when I was young. Would it not have been a good idea to do so, given the large 5 figure sum of tax I now provide per year? There were several occasions when I almost died because of the lack of help and now these "services" denying help to my children are quite happy to take my tax payment to pay their salaries and not do their jobs. Yet I could have earned two or three times as much and paid even more tax and achieved so much more if it wasn't for them failing me as a child.

Yet they haven't learned a thing so the cycle would repeat, if I was not paying twice in order to prevent that from happening. And when - I hope - the protection and help I provide to my children to fill the gaps where these services I pay for are meant to be means they can fulfil their potential, these same parasites will no doubt continue to live off the tax money my children pay as adults and be gaslighting them and minimising my own children's support needs in 30 years' time and trying to destroy their life chances and mental health as well, to save themselves a few pounds in the short term.

ZombiePlanet · 17/09/2024 15:57

Foxesandsquirrels · 17/09/2024 15:39

@Kirstay I'm not sure what point you're trying to prove or that man so I'm sorry if this is out of line but surely you don't think someone who has their needs met, therefore can function, is no longer autistic?
Just because someone gets a cochlear implant doesn't mean they're no longer deaf. I also function very well with my glasses but if you took them off me it would actually make me very very unsafe even though I'm not blind I'd probably burn myself or cause a serious car accident. If someone has been given enough support to function, it doesn't mean the underlying difficulties aren't there anymore. This is a big problem behind diagnosing people based on severity of symptoms. We've become a lot better with diagnosis but the terminology hasn't caught up.
So many stage 4 cancer patients have no sign of disease due to the excellent medicine they now have, yet they're still classed as having cancer. Because without that medicine they wouldn't be able to survive. I don't understand why we can't look at SEN the same way.

Yep. Exactly. This is what so many totally ignorant people still think. It's quite unbelievable, especially when it is coming from people with autistic family members.

This is exactly what happened to my daughter when she started school. With early intervention and diagnosis and intensive support we had prepared her really well so they had a child turn up who was outwardly confident and keen to socialise and learn and could just about cope. They then decided that because we'd done all of that and it worked she didn't need any support - despite it having been agreed in advance and the help she needed well-documented in her diagnosis reports - so they didn't implement the agreed plan and it has gad a catastrophic effect on her leading to her missing over a term of Reception and wrecking her mental health and making her suicidal.

I hope there is a special and particularly painful place in hell reserved for all of the so-called SENCOs and Local Authority teams who supposedly are employed to help children with disabilities who routinely destroy the educations and mental health of children to whom they have a duty of care.

RedToothBrush · 17/09/2024 16:05

ZombiePlanet · 17/09/2024 14:14

I didn't understand any of it. Nobody had ever explained that your family treating you like this wasn't normal. It took me until my 20s and seeing more of other people's families before I could comprehend what mine had done.

Nobody helped me to understand anything. I didn't know about social relationships or how men prey on young women. I was getting straight As at school despite all of this happening and living alone but had no idea about the predators by whom I was surrounded or that what they were doing was wrong. I thought these people were being nice to me because they seemed kind and nobody had explained to me that people lie. I just knew I wanted to die, so tried to several times.

With diagnosis and proper support my life would have been very, very different. Being compliant at school and academically bright does not mean a child is less in need of help and protection for the vulnerabilities arising from their disability.

On average, an autistic person's emotional age/ understanding is roughly 2/3 of their actual age. So I was effectively an 11 year old living alone.

But even with the best family and specialist/ medical and school support via and EHCP this is why autistic children are so vulnerable. Effectively you have 11 year olds in classes with 16 year olds (emotionally and socially, while they may well far exceed the NT kids academically). You have NT 11 year olds starting school with the autistic children who are still 7-8 years old in their social understanding. They are SO vulnerable and therefore have very high support needs in these educational environments designed for NT children regardless of how good their masking is. Their masking puts them more at risk and means they need MORE support, not less, because of the mental health impacts of masking and because ignorant people use the masking as an excuse to ignore their support needs and make them cope alone, until they can't and they either collapse or die.

You don't mention how mental health support generally is not rally geared up for dealing with autistic girls generally.

If you are an autistic women who is intelligent and generally copes by masking what happens is this.

You go on for so long before it all gets too much.
You then have a mental health crisis.
You get a diagnosis and put on meds.
But the meds don't really help.
You eventually get back on track.
And you repeat the cycle until you have another mental health crisis and perhaps get a different diagnosis.
You don't fit their treatment plans.
Its not uncommon for people with autism to struggle with telephones.
So naturally mental health services in many places only do assessments over the phone. Which makes it much more difficult for anyone autistic to access. (Telephone only assessments boggle my mind in terms of logic given theres such high rates of mental health problems amongst people with autistism).
Of course if they had a diagnosis of autism they could make an argument for the need for reasonable adjustments to allow for this.
Women with autism and ADHD typically go through a number of misdiagnosises before someone works out they are autistic, if they work it out at all.

I know a number of women who have gone through this cycle. It affects them massively in terms of life experience.

On the surface they can hold down a job and manage their life. Until they can't because they have a burnout.

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