Majority of child autism referrals will be rejected under new criteria SW England

[noblegiraffe]

A story in the Guardian says that on 1st March, NHS South West England introduced, without warning, new criteria for accepting autism referrals.

These include risk of education breakdown, risk of family breakdown, or very low communication levels, which is an extremely high threshold.

https://www.theguardian.com/society/2023/mar/26/children-put-at-risk-as-nhs-autism-assessments-are-cut-back

As a teacher, this is horrifying. A child being diagnosed with autism means that the support can be put in place that may prevent an education breakdown or family breakdown in the future. This will mean that things have to reach crisis point before a referral is even accepted.

Schools are supposed to provide support per need, without a diagnosis, but resources are so scarce that those with a diagnosis are obviously prioritised.

The story also says the new approach brings the SW in line with services in the rest of the country. So autistic children are being denied a diagnosis across the country?

Err no I’m not. She needed a diagnosis so care and treatment could be adapted and reasonable adjustments made.

Those conditions are often diagnosed either very early on or as a result of other investigations often to rule out things that are treatable. ADHD and ASD seem to be quite unique in that people wait on long waiting lists for a diagnosis which often seems to be just confirm what they believed all along.

Ime they often are and were with my daughter.ADOS and the report picked up in a lot and made recommendations.

Legally none of those things are dependent on diagnosis, they are supposed to be dependent on need. I am sorry if you were given the wrong information and led to believe they are diagnosis dependent.

They may be diagnosed early, although not necessarily especially learning disability and visual impairment. But that wasn’t your point, your point was about treatment.

None of that requires a diagnosis. Sadly, many parents are misinformed.

What happens if a medic does not give a diagnosis yet the parent does decide there is a need. Would the parent simply go elsewhere or complain that the lack of diagnosis is incorrect? I think there could be battle lines drawn between the family and the NHS in these instances and how can they be resolved without recourse to lengthy appeals?

Reasonable adjustments are not diagnosis dependent, they are need dependent. Speech therapy and mental health support and treatment for example do not require ASD diagnoses and are accessed by many people who do not have diagnoses of neurodiversity.

They are. Counselling and treatment for illness such as Anorexia needs adapting with autism. You need an adhd diagnosis to access medication. ADHD is often picked up in autism diagnosis, certainly was in my case and my dc’s.

This will be catastrophic did young people's mental health. You can't just not diagnose children and think that they will be ok.

Diagnosis IS important, socially, emotionally and educationally. In theory it isn't needed for education support or an ehcp, but in practice it matters a lot to the level of understanding.

There isn't an over diagnosis problem. I hate that 'we're all a bit autistic' nonsense. Many people share autistic traits, because they are all normal human behaviours, but that does not make them a bit autistic. To be autistic, you have to fit the diagnostic criteria of a number of traits, that affect your daily life to a significant degree.

Dubious is the polite word for it.

The phrase "everyone is a little bit autistic" is really bloody offensive. It trivialises autism and is absolutely not true.

There's a number of psychologists who I've heard expounding this view - but when you ask them to explain how this fits in with brain MRI changes demonstrated in autistic people, there's no answer.

No, we're not all a "little bit autistic" in the same way we're not all "a little bit pregnant" just because we get swollen ankles or food cravings sometimes.

Where some confusion lies is the fact that neurotypical people might have some character traits which are typically also associated with autism - such as noise aversion, or dislike of change. The difference is that those traits occur in isolation, and typically at a very different intensity to what is experienced by autistic folk.

There are some autistic people who undoubtedly have very profound and severe difficulties. But even individuals who would previously have been described as "high functioning" (a term no longer used) can have times of extreme difficulty. In addition, autistic girls and women tend to mask heavily and privately there can be very marked effects on their mental health, their well-being and their functioning.

Suggesting that individuals should only get a diagnosis if they fit into a crisis category is abhorrent - and it demonstrates the ableism inherent in our society today. If you have mental health difficulties, no one would be suggesting that you should be prevented from accessing help unless you were suicidal. And that's because we recognise that early intervention can prevent long-term damage. The same applies to autism.

The fact that the NHS is so broken it can't cope with legitimate referrals is a whole different issue. Every autistic child should be able to access a diagnosis, because if they don't, many of them will go on to suffer significant mental health difficulties in their teens and as young adults.

More funding would be wonderful, but even without that, there's a lot of changes that could be made. CAMHS isn't fit for purpose and there's a lot of extra agencies and red tape involved that doesn't help anyone.

Even now, before these changes are brought in, you can't just "get referred for an autism assessment" because your child is behaving badly and you suspect SEN. You need evidence from the school and from other health professionals such as CAMHS, SALT, Educational Psychology, ATS etc to back the referral. GPs aren't supposed to make a referral just on the parent's request - and in my experience, it can be a huge, huge battle getting the GP to agree to refer.

I'm speaking as the mother to two autistic DC, twins, one DD, one DS. DS has very significant needs indeed and was diagnosed aged 3. DD wasn't diagnosed until age 10 when she started to struggle. Her functioning was below that of a 6 yr old in many ways - but no one spotted it at school. THIS is why a referral matters - even if it's not immediately obvious that a child is in crisis.

And yes, I'm autistic/ADHD too.

I am not aware of long waiting lists of people awaiting visual impairment and LD diagnoses who believe they have these conditions but just need it confirmed. If this is the case I would pretty much hold the same view.

Autism is a protected disability. Reasonable adjustment is hard to get in many areas with a diagnosis let alone without. I have been through the process 3 times now and it was made very clear by professionals that diagnosis was needed for several reasons. It has been crucial in my dc’s treatment.

The treatment may need adapting but that is on a needs basis not a diagnostic one. ADHD is not comparable as there are medications available that can only be accessed via a diagnosis.

You're not wrong @Blu3Salv1a .

Accessing help is supposed to be needs-dependent, and not driven by diagnosis, but that's not the reality.

For example, schools frequently aren't willing to offer the same level of support unless a child has been diagnosed (I'm referring to pre-EHCP levels of support here as not all autistic children progress to an EHCP but still need extra help).

Disability is the protected characteristic, not autism. I am not disagreeing that the system is broken but I am not sure everyone getting a diagnosis is the answer. I am sorry you have had such a battle.

“The treatment may need adapting but that is on a needs basis not a diagnostic one.”

You are incorrect. A diagnosis was needed and rushed through. Diagnosis is needed for protection too. It is also hugely beneficial in other areas.

The part of your post I replied to wasn’t about the waiting lists, it was about not diagnosing because there’s no ‘treatment’. Although, yes, in many areas there are long waiting lists for a learning disability diagnosis.

The reason why a diagnosis makes a difference is that it proves that you're not just "making it up", and that the child isn't "naughty" or "difficult", or that they shouldn't just have to "try harder".

It's heartbreaking but this is what our undiagnosed children are still facing. Even WITH a diagnosis it's still sometimes difficult to get people to appreciate that the difficulties are real. Invisible disabilities are really hard to get taken seriously - and if you don't have a diagnosis, then it can be almost impossible.

sad to say @SquirrelsAreStinky that in many areas you cannot access mental health support unless you are suicidal so it's not only autism referral that are receiving this level of gatekeeping

That sounds like a similar bullshit policy decision much like the crap spouted by LAs about EHCNAs rather than an actual clinical decision. Like I said sorry you have had to battle.

Interesting, I have not come across the same waiting list issue with regard to LD

I realised as I wrote that it was a poor analogy because our mental health services is on its knees. So completely agree on that part.

But for example, you can still go to your GP and get prescribed antidepressants, and you can usually get referred for mental health support - even if the wait is extortionate. I was referred 18 months ago for urgent mental health support. Urgent. 18 months later, still waiting. It's awful for so many folk.

My post was way too long really, and I didn't want to add to it. But I think the point I was poorly making was that there are people here agreeing that no diagnosis for autism is necessary. And that is so far, far away from the truth it's painful. No one here is suggesting that individuals with mental health issues should not get treatment. And that's what I mean about ableism - autistic people don't matter. Apparently we don't really need a diagnosis unless we're in absolute crisis - people wouldn't be agreeing with this statement for other types of disabilities.

I'm sorry but we are three years into this process. And I think you will find that the help does actually require a formal diagnosis.
We have had the most senior camhs practitioner tell us that they will not provide their service due to the ASD, he needed the diagnosis to access the help from the ASD services.
DLA claims get knocked back even for families that have medical evidence.
School cannot provide much without extra funding.
EHCPs are almost impossible to obtain.
Alternative provision for education is only offered with an ehcp or once their education has broken down completely.

I think it's very easy to sit and say the support is available, but it isn't and you only find that out when you are living it.

It might be abundantly clear a child has significant needs, but it is not clear why they have those needs or the best support for them. Is a child struggling verbally because they are deaf, have autism or dont get much practice at home due to parental mental health issues? You have to establish why. You cant just go that child isnt very verbal and hope some generic strategy helps. My son spent 4 years having totally the wrong type of sensory support from misguided people thinking its obvious he has sensory needs and using the wrong strategies from a paper 'toolkit' given out by the LA as best practice.

The same observable traits can have very different causes, so its really important to identify the cause as the coping strategies and treatments (meds are given for some things) will be different depending in the cause. A child with attachment disorder, fetal alcohol syndrome, adhd, even some viruses can present just like a child with autism.