Autistic girl dragged from home for unknown Food Sensitivities

I'm not asking for anything unreasonable! If anything I'm putting this out there for those who don't know what to expect. 

There's a difference between demanding ethics and expecting medical professionals to use a bit of sensibility rather than presuming and actually doing harm - which there is an account of in this case. 

Fiona said:

they are looking at her behaviour through a neurotypical lens and coming up with the wrong conclusion.

So, while I can understand that there might not be an 'overt discrimination', there is also a difference between a professional who should know how to begin to ask the right questions and one who cannot see the nuances of difference, even being informed of hyper mobility, who and not only physically harms the patient but also lacks the maturity to afford dignity and act professionally. The accounts of are "carers" who lack any compassion, who abuse, disrespect and use derogatory language toward a young girl. I don't think this should be allowed in health care at any level. That can't be unreasonable to expect. 

Once we can properly assess where the lines of safety exist, then we know what to expect even if it's not ideal or the system is complicating a thing to the degree that being overworked prohibits reasonable and responsible care. I've experienced first hand the lack of basic knowledge on things - such as air pressure and blood pressure and sharp changes equating to more arrivals at A&E. I rarely encounter anyone working in medicine with the generational knowledge my grandparents or even, deep sea divers might have on the matter.  These things cannot be estranged, but they are. Caution, therefore is required. 

Ian said:

she was not getting adequate nutrition

Her mother reported she had been eating 3 x a day and then some. She was still losing weight. This tells me there is good enough reason to not just hand her a protein  'shake'. While a basic bloods was reported fine, it doesn't mean they properly tested. One has to know what to look for and request these tests. The science behind even gluten allergies is puzzling, but gut-biome tests exist. Thinking beyond a psychological issue and a basic Typical narcissism here is key, and they were involved enough it seems, to have looked a bit further. 

Of course our gut biome is going to be different. Vegetation and location changes what we need along with genetics.

I don't really even think we need to make a decision as to where the discreet lines of mental health begin and end. Even if we look at the bodies Inhibitors and Filtering, how much is too much? If I can filter out the smell of gas leaking in my home that's not healthy (I had a flat mate and a landlord who couldn't smell it, thankfully the technician I called could). And if I can acutely smell gas though the walls of my neighbour, well, that's produces a safer life. Yet, hyper-sensitivity to elements is treated as 'ill-health'. And in many cases, it is part and parcel with being more than under the weather.  We might agree that most things are best in a balance. 

The links I'd added above are just a few in a pool of many regarding Autism and a biological difference. And accordingly, I would go so far as to say Monotrpism in the very extreme is most likely the result of lower GABA. But gut health is also linked to hormonal balance among many other things.

Of course, back to the issue of too much filtering out unwanted noise as a learned mechanism and you have individuals as above, joining a cult instead of maintaining somatic balance! 

By way of analogy, did you see the news today of a woman who died from "slapping therapy" ? She believed that she could cure her diabetes by coming off her medication and joining a cult where they slapped each other ... yes, seriously. Regular slapping does not cure diabetes - we now have the proof.

There is good research that links the gut biome to mental health - it appears to involve the vagus nerve and neurotransmitters. So there may be some relevance to some autistic behaviours. However, " correlation does not imply causality ".  I know an kid who lives almost entirely on chicken nuggets. This is not a healthy diet, and I bet his gut biome will be very different from his friend who eats green vegetables, cheese, yoghurt etc. - because the bugs come from what we eat.  I doubt very much that this lad's immune system is "programmed" to reject everything except chicken nuggets. The issue is at the other end of the vagus nerve, in his brain.

It would appear that the young lady who was "sectioned" had such a restricted diet that she was not getting adequate nutrition. It is not just a matter of losing weight - without essential vitamins and minerals the body ceases to work. Electrolytes go out of balance. The body cannot synthesise essential biochemicals. Eating disorders are a major cause of death. This applies whether or not the patient is autistic.

It's not so much that professionals " might not have bothered" , they just may not have read (or even seen) a particular piece of research out of the thousands of journal items, podcasts and papers published each day.  A busy professional may be able to get in a few hours CPD each week. If they don't ride your particular hobby horse it does not mean they can't be bothered, it may mean they have different priorities.

AMHPS, BIAs and Approved Doctors not only need to be aware of developments across a wide range of mental health disorders and conditions, they are also expected to keep up with the law. It is reasonable to expect a standard of professional competence, but the assessing professional cannot be an expert on everything. The aim of a "section" is to get the patient to a place of safety where their needs can be properly assessed and appropriately treated by experts. Yes, as in all areas of life "experts" sometimes make mistakes - medicine is not an exact science.

In ordinary life, you may miss a sale, or your cake may go flat, or you may fail to spot a minor fault ... medicine is the same. Medics can't get everything right 100% of the time, any more than car salespeople, computer technicians, or pastry cooks. It is just that their errors tend to have more significant consequences.

This is the UK. Legal Aid is available for Mental Health Act cases. We don't do "class actions" as a rule. There are established procedures for contesting "sections" by the patient and their nearest relative. The authorities have to follow legal processes. Going to the press will cause a fuss if that is what you want, but actually getting a patient released from a section requires a specific, legal decision by the Hospital Managers, Mental Health Act tribunal or a Court, and that starts with a formal application by the patient or nearest relative.

When it comes to s2 and s.3 Mental Health Act 1983 "sectioning" the police are incidental - authority lies with the  Authorised Mental Heath Practitioner, the doctor(s) and the nearest relative. The police are only involved if the patient refuses to cooperate with the medical and ambulance staff, where they may use reasonable force to "convey" the patient to the hospital for assessment or treatment.

Yet another attack on social workers and health professionals?

The young lady is eighteen so it is not a child protection matter.  It might be an adult safeguarding issue if the parent is going against medical advice and the daughter lacks capacity. Abuse/neglect could include taking the patient away to avoid lawful detention for treatment of a mental disorder. If the patient has the capacity she has a right to refuse treatment unless she is mentally ill, when the Mental Health Acts come into force. This applies whether or not the patient is autistic -  the section is presumably for assessment/treatment of an eating disorder. In Scotland (but not England and Wales) it is also possible to remove an adult who is not mentally ill but is at risk of harm from self-neglect (previously s47 National Assistance Act 1948) - but the context implies that this case involved the Mental Health 1983, either s2 (assessment) or s3 (treatment.)

The Mental Health Act 1983 is very clear about "sectioning" and the rights of nearest relatives. If the mother is the nearest relative, she has rights, including a right to be consulted. (s.11)  However, by removing the patient and going into hiding rather than using the proper legal process raises the question of whether the parent is appropriate as the nearest relative. She may think she is acting in the patient's best interests, but maybe she is mistaken.

The sensible thing to do is to get legal advice and use the legal process to remove the patient from the hospital, providing there is appropriate care in the community. It may be that hard-pressed community services cannot provide optimum care, and that hospital treatment is the only practical option in the circumstances.

AMHPs and mental health doctors are required to have autism training - if you want to query their clinical judgement or actions, use the relevant complaints procedures or the Mental Health Act.

Petitions and protests are no substitute for using the proper procedures

The trouble is that managers are under pressure to reduce waiting lists/caseloads. Departments are short-staffed and under-resourced. Releasing staff for training has a cost in terms of staff hours taken away from frontline service delivery. A lot of mandatory stuff does not happen because authorities do not have the money or resources - politicians are always ready to put extra work on authorities, but not good at paying for it.

This is a remarkable well balanced view on the situation.

Fiona said:

The police viewed her behaviour as a threat

As we see on other threads here, the police force are pretty much a hammer and to them every problem looks like a nail. It is refreshing to see NAS producing a guide for them for when they deal with autists so progress is being made thankfully.

I suspect social services had some busybody report child abuse or neglect which tends to bring the services out in force without evidence. The entirely predictable escalation of events would have been avoided if they had been given the NAS training and a few minutes of research on the "perps" before the visit.

If the poor girl had ended up hitting a police officer then she could have ended up with a criminal record for assaulting a police officer too.

It is sad and a situation we see repeated way too often.

JuniperFromGallifrey said:

Autistic Discrimination

I don't see what's discriminatory about this situation. They are not saying they know she is autistic and discriminating against her, they are looking at her behaviour through a neurotypical lens and coming up with the wrong conclusion. The police viewed her behaviour as a threat, because in their experience neurotypical people who behave like that are generally violent and aggressive, so therefore they learn to be proactive in responding so they don't get hurt themselves. They probably haven't met an autistic person before, to be aware her behaviour came from a place of overstimulation or anxiety. So I'm not convinced of the discrimination angle.

Her story and situation are tragic and traumatic, and nobody should be treated like that. There should be a mountain of paperwork presented before they came to the door to take her to hospital. Social work, where most of these situations arise, should have been in contact before things escalated to be this bad.

JuniperFromGallifrey said:

not have bothered

Healthcare professionals are highly trained and registered to ensure their fitness to practice. The dieticians and kitchen staff are specialists in nutrition - but your regular doctor/nurse will only have the basics. What you are calling for is highly specialised, and infrequently accessed information. It would be inefficient to train millions of healthcare workers in this, if only say 2,000 need the information. The others just need to know how to contact the experts.

Also, remember the NHS has patient confidentiality higher priority than freedom of the press, so of course they will not comment. My friend says staff are already criticised for not getting their mandatory training done on time, and some don't get breaks. Imagine working 13h shifts on your feet serving others all day, no breaks, doing your best but still being berated for not being up to date on fire safety... never mind on the hundreds of minority populations covered by the Equality Act. I am not making excuses, just pleading for understanding.

Should the patient, or her family, wish to complain about the NHS there are formal channels to take this through. All of which are less emotive than standing outside a shared facility where patients are at high levels of anxiety and distress and may be further distressed by the protesters' actions, and are less emotive than complaining to the press who sensationalise things to get sales and clicks.

I was aware of this from another source. I've signed the petition to let her go home.

Pen-Pushers are the issue. And the, current, NHS is chock-full of them.

I think the Police are going through an interesting phase.I will be tactful as I am currently in the great Judicial system that is slow cruel and unfair.I too am in a pressure group to help with something called CPWs and CPNs .I cannot really add much more other than our community must not put up with the abuse we suffer through ignorance and no understanding.We are expected to engage with the world the same as the non neuro diverse.I have had one organisation as referring to me as having M.H. issues.I replaced would they refer to a cancer sufferer as having carcinoma issues!

Stay strong

I think that autism specific training is still relatively speaking in its infancy. I don't doubt that its early form will be far from perfect, but it seems like a good start, and something which can be built on.

In terms of osteopaths and the like... There seems to be a sane approach which recognises that not everyone needs to have the same. I guess osteopaths maybe should have the first tier. They should most definitely have some. Perhaps he should ask for it, saying that it's a requirement of the Health and Care Act 2022. That should set the cat among the pigeons!

when things get bad like this, make a stink, making the most noise as possible in as many ways to as many people as one can is best: info bomb the press, the neighbors, the agency involved, other agencies, everyone. The only thing not to do is nothing. The press is the most efficacious and pro bono lawyers.

Keep records and files of everything and make a time line of what's happened. File a class action suit, if you have a willing lawyer and a few willing plaintiffs. Most of these thoughtless action happen when the perps think no one is looking or cares.

We used to call this "whistle blowing', and "dropping a dime" (into the pay phone slot).

This looks good - a starting point at least although it seems fairly high level.

If this can be expanded over time to include more of the biologu the JuniperFromGallifrey talks about then it will have a meaningful impact in cases such as the one at the start of this thread.

I have a friend who is a osteopath part time in the NHS and he says he has never been asked to take this training so it may not be appled to all areas or not mandatory for everyone.

I'll have a good trawl through the research JuniperFromGallifrey has posted - thanks for that.

...and the latest position is given on this Health Education England web page: www.hee.nhs.uk/.../oliver-mcgowan-mandatory-training-learning-disability-autism

I was in hospital in November. Not one person I encountered could 'speak' autistic. They were dehydrating me faster than my body could fix itself, they had nothing available that I could eat.

I know first hand 'training' is pointless. They need hard facts of a difference in biology to respond properly. 

It would take a while to compile, there's a lot of medical journals. While a search for gut microbiome +Autism can turn up a good deal, I'll pull some which link to dozens more and give an idea of how to further search. One has to overlook some of the wording in these, but the research on this specific issue is key. Some claim it's emerging while others have a good amount of evidence.

https://www.sciencedirect.com/science/article/pii/S2225411022000281

https://www.frontiersin.org/journals/cellular-and-infection-microbiology/articles/10.3389/fcimb.2022.915701/full

https://www.nature.com/articles/s41575-023-00857-1

https://www.sciencedirect.com/science/article/abs/pii/S0889159118300783

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8638778/

I could keep going... they're everywhere. 

However, "Divergent Training" should come second, as there is a growing disdain to someone getting 'special treatment' for being different. 

FIRST: Knowledge of the biological potentials and research in progress: gut-health issues, allergies, inflammation, gut microbiome - all these should be step one as it changes the entire perspective and therefore, bias. It changes how autistics are treated. Had this team known that potentially there is an issue with absorbing nutrients which cannot be easily communicated and is not intuitive, they wouldn't quarantine her and treat her like a criminal who's simply protesting 'food' for a psychosomatic reason. 

Sepsis is another often overlooked. 

I only recently discovered that training is already mandated. The Health and Care Act 2022 specifically mentions autism in Section 181 (https://www.legislation.gov.uk/ukpga/2022/31/section/181). I have no doubt that the inclusion of this in the Act is due in part to the work of NAS and other campaigning parties. How it's implemented is key, of course, but I believe training resources are pretty readily available.