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

[orangeleopard]

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

But we do already distinguish between severity, we use terms like high support needs and low support needs, and support needs are usually identified through the diagnostic criteria but they're not given a level of diagnostic need at that point in time because support needs change.

My son would almost definitely have been given a level 3 at diagnosis but 2 years on he doesn't fall in line with the level 3 criteria any more but also doesn't really fit in with level 2.

At his age I would have been level 1, and I'm so far out of level 1 now but that's because at the time my support needs were not met and I have since developed cPTSD which is quite common for late diagnosed autistics.

We don't have a rigid structure for support need identification, but it doesn't stop us identifying needs. It just takes away the harmful labels that might prevent someone getting the right support if their support needs change.

We used

Autism and ADHD Assessments - Berkshire Psychology

It was about £1,500 not quite hundreds but not £4k either. They did an screening interview first so wouldn't charge the full amount if the it looked unlikely that there would be a diagnosis.

No, but there is a limit to what a professional can verify. I think pretending otherwise is really misleading. This is why so much emphasis is put on how you fill in the forms and explain the child's struggles. Even professional opinion is often informed by parental input as they are often the only ones that witness the meltdowns and sleepless nights when a child is good at masking.

I think it's really important to stop pretending that the autism diagnosis process and DLA process is more scientific and medicalised than it actually is. They will seek to verify with independent parties where they can but I have known of at least two children who have received an autism diagnosis despite the school having no concerns and no other external parties presenting any evidence. It is possible and happens all the time. The diagnosis was a key piece of evidence for the DLA claim

Of course there are varying levels, how can it possibly ''all be the same''.

Again, nobody said it is "all the same". That does not equate to being able to categorise people into "levels of severity". Try reading the posts.

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 agree but this is then where being able to say that your DC is on the waiting list for an assessment (knowing this is a 2/3 year wait) would be helpful to support this type of claim.

Imo children who undoubtedly qualify for a special needs school (& teachers agree) should be given priority in order to be given a place ASAP.

@NotTheMamaNotTheMama I am so sorry. 💐 This is devastating to read.

People talking about 'level 1 ASD' - would this have been a diagnosis of Asperger's 10 years ago?

Disagree with you, sorry. My daughter attended school full time, she'd then come home and have huge meltdowns after masking and had severe anxiety and mental health issues that she became bulimic and would self harm and had suicidal thoughts which she attempted to carry out twice. No one would know this outside of our immediate family.

Any child who is referred to a pediatrician obviously has a need to be seen and you can't pick and choose which deserves it more. I know the time it takes to be seen is shit but some can't be bumped up the list to the detriment of others.

@orangeleopard I think the single most important point is that getting a diagnosis does not mean access to any support. My youngest has just been diagnosed, he is now 8 and the process has taken more than 2 years. We got the diagnosis letter and a leaflet, and told we were now discharged. That's it.

The support has come from the school going through the EHCP process and getting that sorted out and finalised. As part of the EHCP process, an occupational therapist sees him regularly in school, and advises. The school have access to an Autism/Social Communication advisory panel who they regularly liaise with. He has a 1-2-1 TA in lessons, and other adjustments as needed.

I think your focus should be on getting the school to engage with the EHCP process urgently, if they won't then you can start the process yourself. Does he have an Individual Learning Plan or similar from the school at the moment? They should be recording what adjustments they have put in place as part of the process of getting the EHCP.

A claim made with little corroborating evidence is less likely to be successful as one where several different agencies are involved. So if a child isn’t under any consultants, the school isn’t in agreement/wont write anything in support and it’s only based on what is seen at home, the chance of success is lower. When I first applied for my eldest it was the consultant I had an issue with, the school was fully supportive. The consultant could see developing issues but didn’t feel they warranted being put on a waiting list at that time. If the school had not actively said ‘we have put SEN specific support in place as this child evidently needs it’ I’m not sure the claim would have been successful for him.

Proving night time needs is a fucking roulette though. My middle son never slept, from being a newborn. Was given middle rate care initially, then reapplied with all the information about said nighttime needs (highest rate only given for day and night needs). By this point he was highly destructive at night, I was getting 4 hours sleep as most of the time was spent making sure he wasn’t hurting himself or wrecking the house. They refused it based on no diagnosis or medication. Had to wait for his autism diagnosis to fight it. My eldest? Given the highest rate with no diagnosis or melatonin at the time, just explained that he needed help toileting at night and they accepted it.

Ive been told to apply for my youngest, but I’m still waiting on a few bits of paperwork. I have support from his nursery, a report from the council SEN team, a speech therapy report and a paediatric report saying he has been accepted for ASD assessment. And I’m still not quite ready to fill it out because I need to make sure every single factor is correlated. It’s really not as simple as ‘my child has difficulties, fill out the form for shits, giggles and free money’.

Levels of autism make no sense.

Someone mentioned earlier in the thread how their child is much more severely affected a few years later.

If my DD was given a 'level' at the point of diagnosis I would have to take her bloody back now 5 year in to be reassessed. She was a skilled masker and we had no idea by the time she hit mid teens she would no longer be in school, be absolutely mute outside of the immediate family or need a supportive adult with her to use the bathroom in her own home.

"Your child is obviously struggling hugely and should be prioritised over someone that seeking a diagnosis for their child as they have an inkling that they may have autism."

@Bumpitybumper I just 'had an inkling' about my very highly able 15 year old almost 2 years ago. 18 months ago she started to struggle with going to school. She was still going, but it was stressful, and she started to miss days (she was an obsessive 100% attendance girl). By June, I was making a complaint to school that she wasn't being dealt with, and they put support in place. By September, she was virtually out of all classes. By November, she was completely out of school, unable to leave the house.

Luckily for us, our LA has assessed the child that she is, and hasn't taken a lack of diagnosis to mean 'no need' and she's now at a specialist provider. But 'having an inkling' doesn't mean 'no needs' or 'few needs'. It just means 'noticed early'.

I agree with you.

This is currently my DD and was/is me with a late diagnosis at 35. Just because you can't 'see' it so clearly doesn't mean it doesn't significantly impact on daily life.

it is, because he can have a normal conversation with you sometimes, if its about something he is interested in.

After a few minutes you can start to see some of the issues that are his 'tells' that something is a bit funky in his social communication skills.. like the monologuing, not giving gaps for you to enter the conversation, talking over you, not answering your questions and disappearing on tangents, or sometimes just plain walking away mid conversation because he's checked out (his adhd is also hell to handle and doesn't help)

He CAN 'sit on mumsnet typing away' and frequently does similar when discussing his interests with his school friends over discord, and me when we're talking over discord ourselves about something he doesn't want to come downstairs to discuss with me.

If you met him, he'd seem like a 'normal' teenager on first impressions. I have functioning adult friends who present very similarly who work in the gaming and computing industry.

The point i was making are that his communication skills don't mean he isn't profoundly affected by his disabilities in other areas.

The diagnosis of autism is that it literally impacts day to day life so your proposal is ludicrous.

My son attended school daily and on the surface presented as neurotypical yet his behaviour at home was outrageous. After school was the worst (decompressing from masking all day). I was literally on the brink of a breakdown dealing with this. According to your proposal he should not be seen until after your son. Nope!

Levels and ‘functioning’ is absolute bs. It’s because people compare ASD with global delays/learning disabilities with children/adults who have ASD without LD. Some of the ‘least functioning’ adults I know with autism (diagnosed or not) are those who ‘managed fine with academics’ or ‘have held down a job’ but are absolutely flagging in every other area of their lives. People conflict intelligence with what autism actually is.

As I mentioned earlier, it is totally normal for conditions to fluctuate and in some ways be hard to categorise. Even something like depression can be subthreshold to severe and can obviously change over time. That doesn't mean that we don't label the severity or view a label as harmful. A structure is helpful as it helps you allocate support, resource and is just generally more useful than using umbrella terms. Saying 'I have cancer' is less informative than saying 'I have grade 1 cancer'.

I think also the idea that severity can't be pinned down without being harmful but that diagnosis can be binary and definitive is bizarre. By your logic someone that has been through the diagnosis process could well get a different outcome depending on what stage they undertook the test. So there is no such thing as being autistic or not being autistic either.

@orangeleopard does he have an EHCP? primary schools are generally very poor at getting the right help for children with SEN. You need to ask school to get an Educational Psychologist in and with that report you can apply for an EHCP. You do NOT need a diagnosis to get an EHCP, you just need evidence and school and the EP can provide that evidence. First port is with school to ask if they will support you to get an EHCP, they should bearing in mind that he is only managing to attend half days at present, with the right support it may be possible for that to be increased.

I think they can do this, especially for under 6s. My son was diagnosed by the community paediatrician. His referral was triaged and his initial appointment was 1 year after referral, then the ADOS was about 6 months after that. That was the standard path so I think there is the possibility to fast track if needs are higher.

Also we got his EHCP before his diagnosis. EHCP should be needs based, unfortunately too many people are rejected and have to fight for it but you shouldn't need the diagnosis to get support in school.

This is possibly one of the most ignorant, offensive things I have ever read on this site. I’m sort of hoping you’re just a wind up merchant. Mind you, you’re not the only one. There’s a couple of other posts on this thread that have left me gobsmacked that people can and do think this way.

I do appreciate where you are coming from OP. If you're talking about diagnosis however, it would be unfair for a child who has some needs to be constantly pushed down the queue because there are others with higher needs. They could be waiting several years. And as others have said, we don't always know what emotional impact it is having on them.

The diagnosis has nothing to do with how the school/care setting supports the child. For us, the diagnosis was the last thing we had, the EHCP had already been set up, DLA had already been awarded. Diagnosis was just a confirmation of what we believed. The school should be looking at the child's needs regardless of diagnosis and making a plan, if they're not then you can apply for an EHCP yourself.

Just to chime in on the "just a few hundred pounds" comment, it's around £1500 here.

DS was seen 'quickly' - took a year instead of over two, he was bumped up the waiting list, partly because of EBSA and violent meltdowns that led to me visiting A&E.

But the ALNCo at his school put a lot of work in to make that happen, we had an OT report, reports from various services, including the police who had been called out by a passer by when they heard him screaming during a meltdown. And it was vital we got a diagnosis before applying to secondary schools if he was going to have a chance of getting a place in a specialist autism base.

A year is still too long but it was better than the alternative, and I will be eternally grateful to the ALNCo who made it happen - she'd put so much work in that DS was diagnosed first visit to the paediatrician, when we'd been warned it would take multiple appointments, but the evidence needed was there.

You are very naive if you believe that a child "attending school normallly" doesn't mean they are not severely affected by their ASD. Children have seriously hurt themselves or worse partly due to masking at school.