To find the growing narrative of over diagnosis (autism, adhd and mental health) upsetting and draining

[Frazzlesforever]

There seems to be a drip drip of press headlines and change in the conversation that too many people are getting diagnosed. And that some parents are being too pushy to get extra help or trying to get be benefits etc.

As the parent of a high masking autistic girl I had to push for diagnosis although the school just saw a highly compliant, quiet anxious child. My daughter is now extremely mentally unwell through not coping in school, has had to drop out of school missing her gcses, emergency CAMHs involvement - devastating for her and us.

She is exactly the type of child who would fall under the radar. Just an anxious child with over anxious parents. Apparently seeming to cope until she just couldn't. Surely if anything we need better understanding and support for these types of children not less. Otherwise we also risk kicking the problem down the road To severe problems in adulthood. - poor mental health/outcomes etc.

The worst thing about it is being made to feel that if only we had parented her better, we wouldn't be here. We've parented her with the same behaviour management strategies we used with our ds - who is the kind of teenager any parent would be happy to have, incidentally. It's a cruel irony that those very strategies actually exacerbate the problem where dd is concerned.

They don’t need or get resources as they are allocated on need, in cases like this diagnosis often helps them to not need resources.

I totally agree with you. What they do do is help other parents who are struggling for other reasons which in turn should free up the pathways.

But ADHD medication has changed my life. So a later diagnosis has helped me immeasurably. I paid privately in order to help my child, I thought that if I was less anxious and chaotic it would help (alongside the many MANY parenting classes I paid for by myself). My anxiety disappeared and my work/life/household is calm and organised. Turns out it wasn't anxiety after all it was unmedicated ADHD and my child is still autistic with no help.

Why do we want to make life harder for people? Suck it up because life is shit for everyone? No. I've been treated for every psychiatric symptom going for years, none of it helped until I had my diagnosis. The NHS has wasted 1000s of pounds on unnecessary medication and therapy none of which solved the problem. A diagnosis and proper treatment has done that.

ND is genetic, and is also linked to poverty and poor outcomes which can result in neglect and trauma. This doesn't mean that ND doesn't exist just that these people have been let down by society.

I was nearly pushed to applying for benefits for my child as I couldn't access anything without paying, and I had got to the point where paying £200 a therapy session for a neurodiversity psychologist per week was unsustainable. My child has been let down by every agency who is there to help them thrive - I begged the GP/school/social services for help and none of them have and still don't want to.

School look at me like it's a 'me' problem forgetting that I have another child in that school who does not have these problems. I'm also willing to change, try any and all strategies to help but no one has given me anything that could possibly help other than shrug their shoulders and go 'its not us'.

No it won’t. It’s been established by the NHS AdHD taskforce that wait times are unacceptably long because of:-

“greater awareness, changes in DSM-5 and ICD-11 diagnostic criteria that are reflected in changes to NICE guidelines (e.g. co-diagnosis with autism is now allowed), previous missed or misdiagnosis, especially among females (21), impacts of the Covid-19 pandemic (22, 23), the perceived requirement for a diagnosis to access support (e.g. education) and more recent scientific evidence that ADHD is not restricted to childhood, but often persists across adult life (24). This means adults who were missed as children are now presenting to services.”

They have listed things that can help including :-

”modernisation to improve efficiencies, as well as join-up with other sectors, as not all support needs to be provided by health care.”

What is clear is the importance of diagnosis :-

2. ADHD is a potent, early route into multiple adverse and costly outcomes across different sectors. It thus represents an important early prevention target. ADHD is associated with higher risks of educational failure, not in education, employment or training (NEET), long-term unemployment, welfare costs, early entry into the criminal justice system, family breakdown, chronic mental health problems, self-harm, suicide, substance misuse, obesity, chronic physical illnesses (e.g. cardiovascular disease) and premature mortality (15,16). With early, needs-led support in childhood and timely clinical intervention, when required, many of these impacts and costs can be successfully avoided (e.g.17,18).

“4. ADHD is common and treatable but costly when unsupported. ADHD, defined using diagnostic criteria (e.g. DSM-5), after a high-quality assessment, affects 3–5% of the population (11,12). Although it originates in childhood, the impacts of ADHD are observed across the individual’s lifespan5. Despite the effectiveness of treatment for those who meet diagnostic criteria (13) (psychoeducation, environmental adaptations for all; pharmacological treatments when impairment remains) and consistency of robust scientific evidence on its impacts and costs, ADHD can be downplayed and is prone to misinformation. Currently, the estimated economic costs of not treating ADHD are around £17 billion to the UK economy (6) (e.g. less tax contributions, in receipt of more state benefits, more likely to be not in education, employment or training (NEET) or long-term unemployed and higher costs for health, social care and criminal justice). English population data show that among young people who are NEET, 20–34% are likely to have ADHD, most of whom will not be diagnosed (3, 20). Many of these costs are avoidable, as with appropriate, early support, people with ADHD can thrive.”

Another in agreement better from experience.

My child absolutely knows how to 'behave' as it were - they follow rules to the letter and are a model student in school. But when they end up in fight/flight/freeze mode because of their autism, then it's absolutely their autism which causes the meltdown. They are usually deeply embarrassed after the fact but in that moment, they can't stop and think about whether their behaviour is appropriate or not.

This is not sarcastic but genuinely can you give me some pointers on how to access support for my child. I self referred to early help and followed up five times and they ignored me. GP refused to help saying school or early help, school said not us it's your GP or early help and I'm in a constant loop.

I've now changed GP because my old one was as much use as a chocolate teapot so if you can tell me what I need to say to access support it would be gratefully received.

Some ND is genetic, FASD is not, neither is cerebral palsy, brain injury, attachment disorder caused by neglect, drug injury, vitamin or mineral deficiency…

@T0mat0andch33s3 the two can occur concurrently.

Not everyne with autism has these behaviours if they did it would be part of the diagnosis.

@Nmss you are demonstrating a complete lack of understanding that autism presents differently in different people. Not every autistic person shows violent behaviour. Just like not all are non-verbal, have sensory difficulties, sleep difficulties, etc. That doesn’t mean they aren’t part of autism for some people. You are ignorant to the different presentations. You don’t even want to understand.

Autism doesn't cause violence

It can for some. It isn’t about using it as an excuse, not addressing the root cause, services not being helpful, or it being easier to blame autism, but it can be an explanation and means the situation needs handling differently.

What will happen when where no longer here? My DSs have an LLI so may not outlive me and DH, but if they do, DS3 will need care for life. He will never live independently. His needs won’t magically be fixed just because we are no longer here. Us not being here wouldn’t have changed the outcome of the example about DS3 I gave in my last post. The police decided all on their own DS3 lacked capacity to be responsible for his actions. DS1 doesn’t have ASD but his needs will also mean he will never live independently and he is actually more violent that DS3. DS1 regularly hits, kicks, headbutts/headbangs, bites. Again, it is recognised as part of his disability.

Are you in England? If so, you can request an EHCNA yourself. On their website, ISPSEA has a model letter you can use. You may have to appeal, but an EHCP can provide support.

Totally agree! 👏

The best support can often be found in shared experiences with other parents, who can also often point to local services and charities. I would spend some time googling for SEN parent groups or parent carer groups in your local area then go along. Don’t give up if the first one doesn’t work out - they can be quite mixed.

So basically nothing then. An EHCP takes forever.

Why oh why are parents having to get EHCPs as opposed to diagnosis,ND knowledge, understanding and SEND support they should already be getting in school.

Yes, an EHCP takes time and support should be put in place without, but it is still worth requesting an EHCNA. It is also worth knowing that a) you can force the LA to act if they breach the timescales, b) if you have to appeal and DC isn’t in school full-time, you can request the appeal is expedited, and c) health care provision that educates or trains is actually special educational provision and that includes things like mental health therapies.

That doesn't mean those with profound don't have sibs, cb or can be violent, it just means that there is usually an acknowledgement that something underlying will be causing it eg pain, sensory, frustration, not autism alone.

@Nmss
“Not autism alone”…this sounds like you think autism might be part of the problem if someone with profound autism is violent on occasion, just not if those with other types of autism are.
Odd.

This whole thread has been about different presentations - an EHCP addresses needs arising from an individual child’s specific presentation. A diagnosis doesn’t tell the school if a child is verbal/non-verbal, if they are hyper or hypo sensitive or a mix of both, what speech, language and communication needs they may have, if they need movement breaks or a time out card, how they may respond to specific stimuli, etc etc.

I think that, absence of @ChasingMoreSleep's DS's dx aside, that is the whole point. You are thinking that a specific subset of autistic people (those with a DX of classic autism or profound autism, however you like to describe it) are excluded from an activity intended to cater for the group their subset should be part of (autistic people). However, that isn't necessarily so. The reality is that these groups will only cater for people with autism who can tolerate being around other people with autism, either by being sociable enough to cope with groups, or so lacking in social awareness that the people around them are irrelevant.

I have 3 DDs with ASD. All very different. None would be able to access a group for autistic people for different reasons.

1. Has LD, can communicate but has disordered language. Level of LD is debated but her psychologist told everyone in the LD service meeting not to be so stupid and that it was obvious that she'd need lifelong support from the LD service regardless of what numbers said. Co-morbid mental health difficulties. Probable ADHD. Couldn't cope with being in a group setting.

1. At least average intelligence. Expressive language disorder. Generalised Anxiety and panic attacks. Can't cope with group activities. Goes to a special school with 1:1 support at all times and 1:1 teaching (as in her own lessons with just her and the teacher).

1. Highly intelligent. ASD, ADHD, OCD, trauma. Can't cope with being in groups unless she knows who they are and why they're there. Goes to the same special school as 2.

None of them would be considered profoundly autistic and none of them could access 'autism friendly' anything.

@Lougle DS3, who was the DS I mentioned in reply to the comment about sessions, relaxed performances, short breaks, etc. actually does have an ASD diagnosis.

DS1, who doesn’t have an ASD dx, was mentioned in relation to the ‘but isn’t that behavioural’ part of the comment.

I'll give it a go, but I'm not an expert. Autism is fundamentally a communication disorder. People with autism all share a common set of traits, but the spectrum of traits combine form a constellation on a map, rather than a point on a linear scale. If you think of each aspect of human behaviour as a scale of 0-10, with 0 being 'this just isn't an issue' and 10 being 'it couldn't get any harder if you tried!'

People with autism all have difficulties in interpreting the words and actions of others, and communicating in a way that others understand, whether verbally or by actions. The degree to which they have difficulties varies according to their unique profile. For example, someone with ASD could be so aware of the small nuances of behaviour, tone, body language, and vocabulary that they notice even minute fluctuations and are 'over aware' of communication style, which can cause difficulties because they get very anxious and try to compensate for perceived hostility when there is none intended, such as when someone has a slight headache so is slightly short in tone. Conversely, someone with ASD could be pretty oblivious to changes in tone, etc., so they will seem insensitive and ignorant when someone is trying to communicate that they just want to be left alone. Someone with profound needs may not be able to interpret language (either verbal or body language) at all, and therefore nothing you say will prompt an appropriate reaction.

Similarly, in terms of outgoing communication, some may over think and be extremely verbose, trying to cover all bases and make sure no detail is left out, some may not realise that you don't know what they know, so will give scant information and you have to try to 'join the dots' yourself, and those with profound needs may not communicate in a way that can be understood at all.

In terms of behaviour, typical people learn by cause and effect. For example, a 9 month old suddenly starts pushing their cup off of their highchair. Mum hands it back, a game has started. An autistic person may not see the correlation between their behaviour and the consequence easily (DD1 will pace and harass me if we're going out, and when I finally snap that she needs to give me space she says 'why are you always angry with me?' because she can't understand that pacing backwards and forwards, reminding someone that we need to leave soon 100 times, etc., is irritating). A person with profound needs may not understand that pushing hurts, that throwing something can cause injury, or that some actions have permanent consequences.

Then, add in dysregulation. That's when the nervous system takes over in the 'fight or flight mode'. Adrenaline floods the body. The digestive system shuts down and all the blood flow diverts to the muscles, ready to fight or run. Often, people with autism have really inadequate interoception. That's the ability to know how you're feeling. Many emotions are felt as anger. There's a children's book that describes that anger as a red monster. When the red monster wakes up, the eyes get really tiny, so the person can't see. The ears get really tiny, so the person can't hear. The mouth gets really big so all they can do is scream/shout.

The combination of poor interoception and high adrenaline is pretty toxic, and it can lead to physical behaviour that is injurious to the person or those around them. But it isn't 'behaviour' in the true sense because often the person has completely lost control and they aren't choosing their behaviour, they are simply responding to impulse. Their inhibitions have gone.

It doesn't mean that it can't be changed. Adapting the environment to reduce overwhelm can help. Learning to recognise the signs of impending doom and getting in early with distraction and redirection. Giving clearer signals for transitions or changes of plan. Reducing demand. Reducing stimulus (quiet, dark, cool, etc). Sensory input (e.g. movement or stillness, soft fabrics or knobbly surfaces, something to chew, something to drink, etc).

Social stories can help people with some level of language understanding.

However, if you haven't managed to avert crisis, containment is the only sensible solution until the crisis has passed.

So basically, it's a combination of not understanding what is communicated, not understanding how to communicate, not understanding the consequences of actions, and not being regulated.

The difficulty is that some people with autism absolutely can understand the consequences in theory, but they can't usefully use it to shape their behaviour in the moment.

Hard disagree. The autism is the thing that causes the person to lack the ability to communicate their distress in a socially acceptable way. If a typical person has pain, they say 'This part of my body hurts.' Either they take painkillers, or they have medical investigations, treatment, or surgery. If someone has autism and they either don't know which part of their body hurts, or they don't know how much it hurts, or something hurting is frightening to them, then they may behave in ways which are challenging to manage.

It is a direct consequence of their autism.

I strongly agree that the cause of the behaviour needs to be identified and resolved, but to say it isn't a consequence of their autism is a bit daft.

Yes, sorry if it wasn't clear that I was referring to absence of DS1's ASD dx, rather than absence of any diagnosis for either DS.

Honestly, this is all so divisive. The whole point of complex needs (however arising) is that they don't fit neatly in a box. All 3 of my children are deemed to have complex needs. They don't fit neatly in boxes.