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

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.

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.

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!

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.

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.

"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'.

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.

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’.

@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.

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.

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

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

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

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.

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

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.

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

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.

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.

I completely agree OP. Sorry that he and you are having such a hard time 💐

But you would need evidence to back you up ,yeah there are loads of people that try with no evidence but generally they don't get anywhere .

Anyone who knows an autistic child, as opposed to a child 'on the spectrum', with Asperger's or similar, will realise what a really big disability it is and how it takes its toll on parents/families.

I know it's a different type of disability from the classic autism, but many kids with Aspergers are truly disabled too and it's important people realise this.

My DC with Aspergers has MH difficulties to the extent he will probably never live independently. I think people hear Aspergers and think of bright, quirky kids who'll do well even though they're a bit socially different. That's sometimes the case, but for others the associated anxiety and other MH difficulties, self-harm, lashing out, breakdowns and so on can be truly horrendous and deeply impact the whole family. I think many people don't realise this.

With Aspergers there is no intellectual disability but there are often associated learning disabilities like dylexia which, combined with severe anxiety, can make schooling fraught. Many drop out or attend on limited hours, meaning a parent often has to give up work too to care for their child as in our case. Either I or my DH have to be on call always...no more than 5 mins away. There is no possibility ever of meeting up with friends together in our local city, for example. That just can't happen. It is a very different and limited type of life now for us. And even more so for our DC who is deeply affected.

The Aspergers type of autism is a very real disability for many people @LBFseBrom. Please don't underestimate how serious it can be for those who have it and for their families.

I say this as a mum of a NV ASD 4yo who is extremely high needs and in a fully specialist school. You can imagine the journey and intense fight I’ve been through to get is here.

If your son is still waiting on the initial appointments he’s not autistic on paper. It doesn’t mean he’s any less autistic in person but the argument you’re making is essentially ‘a high needs child with suspected autism’ should be put to the front of the queue and whilst that might seem pedantic it’s actually very important because whilst yes I do agree that there should be a way of screening urgency and importance to offer out appointments to some sooner than others (much as they do in A&E with their priority levels) it’s important to remember that the number of ‘we think they’re autistic’ cases out there is HUGE and autism (as I have come to realise from my son starting his specialist school) is actually just one of the MANY MANY childhood disabilities both physical and intellectual which require very urgent and involved paediatric attention.

Do you think your son should be prioritised over those with cerebral palsy? Rhett syndrome? Down syndrome?
I think what you want is a way to prioritise urgency and shaft the less serious cases down the waiting list to make room for your son, which is understandable but again that system, due to the volumes involved, would mean the lower needs kids simply never got seen or dealt with.

The NHS just isn’t fit for purpose anymore (I’m also married to a doctor) x

I have 3 autistic kids. One so 'severe' he has no school place as no setting will take him. But I don't think he should be expected to wait less time than my dd who masks at school and pays a heavy price with that. I was a masking girl and it gives you lifelong mental health challenges, those who act out like my boy struggle at the time but he will get support and his struggles while life long won't impact his mental health in the same way. Why should my dd be sentenced to a life of mental health struggles just because she can hold it in and direct it at herself?

IP, I really feel for you, and absolutely feel your child should be seen ASAP. But this should be the same for all children who are struggling.

For context, my child is 9. He appears to cope in school, and doesn't cause problems for his teachers as he masks and never speaks up. He had meltdowns at home, starts trying to get out of school on a Saturday night by saying he feels sick, and if he's sick he'll have to have Monday off, and struggles to function generally. He has severe anxiety, has run in front of cars and is not achieving what he should be academically with the right support. He doesn't sleep, but nobody else is aware of that really, as it only affects us as a family.

With the right support, my son could probably functions reasonably well, but is still in a waiting list at 9 and slipping further any further behind his peers. We are currently considering removing him form school because it's not working. His life chances are being severely affected by the long waits, so I struggle with the idea that he, and other children like him should be made to wait even longer (three years at present). But equally, I absolutely don't think you should be waiting OP. We are, however, all in this together, and it just wouldn't be fair for one group of children to be pushed down the wait list to help another.