[autismo-biologia] Adult Autism Strategy consultation

[daniela marianicerati]

Stefano Palazzi, reduce da otto anni di lavoro al prestigioso Maudsley Hospital di Londra, ci ha segnalato la scorsa estate che il National Health Service stava affrontando il problema degli adulti con autismo, problema gravissimo,  sino ad ora sommerso e che sta emergendo in tutta la sua complessità in molti paesi, Italia compresa.
Fa  piacere che il NHS, con la autorità che ha dentro e fuori la Gran Bretagna, affronti il problema con l’intento di dare linee guida per migliorare la situazione.
Il primo atto di questa azione è stata una inchiesta on line che si è conclusa in settembre e di cui compare ora il resoconto. 
I siti di riferimento sono
http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/DH_079431
per l’azione nei confronti degli adulti con autismo in generale

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_111618.pdf
per i risultati dell’inchiesta on line.

Copio dal sito 
The Department of Health (DH) is planning to publish a strategy on autistic spectrum conditions (ASC) by Spring 2010.

Sarà molto interessante leggere la strategia del DH a giorni, se intendiamo la primavera in base a ciò che dice il calendario e non a ciò che segna il termometro. 


Per quanto riguarda il risultato dell’inchiesta, ovvero la 
 “Adult Autism Strategy consultation, 
A summary of the submissions received in response to the online consultation” 
gli estensori premettono, molto opportunamente, che i risultati non sono rappresentativi della generalità in quanto non è stato fatto un campionamento secondo le regole delle ricerche statistiche ma l’accesso alle risposte in Internet è stato volontario. 
Readers should remember that this was a qualitative consultation process, not an opinion poll; the summary or responses on the website are not representative of the population as a whole.

Per noi che siamo abituati alla tipologia delle persone diagnosticate autistiche in Italia, la lettura di questo documento, in cui vengono riportate molte testimonianze dirette, ci fa pensare, in alcuni momenti,  che si parli di temi  lontani dall’autismo, anche di quello ad alta funzione. 
Molte persone che si dicono appartenenti allo spettro autistico  sanno esprimere per iscritto molto bene la loro situazione e i loro sentimenti e sanno navigare in Internet.
Uno di questi dice di avere difficoltà a raggiungere un gruppo di supporto perché lavora a tempo pieno, almeno così si evince dal messaggio

I would have to travel to my nearest City (Newcastle) to access any form of support group. Newcastle is an hour’s bus ride away from me (I don't drive) which makes for very late nights, especially when working full-time. There are no support services in my local area. (A person with an ASC)

Un’ altra persona che si dice affetta da ASC (Autism Spectrum Condition) dice di avere difficoltà coi trasporti pubblici e per questo usa la sua automobile e dal messaggio pare che la guidi lui.

I don’t use public transport cos I find it difficult with noise being pushed in with people of all ages, young difficult people. I have a car but find it hard to get to places I do not know. Could suffer bullying on public transport as well if people think you are strange. (A person with an ASC)


Alcuni risultano coniugati

Doctors, nurses, teachers (who should think about parents with autism not just the children), I have had a big problem with radiographers who think it is ok to pull around your sore bits. Also opticians are a problem at the moment - they want to hoover out my eyeballs. My dentist is good because I can go with my husband and he doesn’t expect me to talk. (A person with an ASC)


Lavoro a tempo pieno, guida dell’automobile, matrimonio sono il sogno di una notte di mezza estate per le persone di ogni età  che in Italia sono diagnosticate autistiche. 

Alcune risposte rimarcano che proprio le questioni poste dall’inchiesta riguardano specificamente le persone con autismo ad alto funzionamento
A number of respondents express the concern that the consultation’s focus is too much on people at the higher-functioning end of ASC and insufficiently on those at the lower end or with multiple conditions:

D’altra parte gli autori del resoconto sottolineano come agli adulti con associata Learning Disabilities ( che io tradurrei ritardo mentale) possono accedere ai servizi per gravi, che esistono, mentre esiste il vuoto per gli adulti che hanno una forma di autismo non associata a ritardo mentale
Respondents draw attention to how people with an ASC can fall into the ‘gap’ between learning difficulties and mental health, and end up not being eligible for the services or support appropriate to either

Al momento attuale la diagnosi di Asperger viene fatta molto raramente in Italia. Probabilmente verrà fatta sempre di più in un prossimo futuro e pertanto molti di questi rilievi con le soluzioni suggerite possono essere utili insieme all’auspicio che le diagnosi si facciano e soprattutto si adotti una strategia per supportare chi le riceve. 

Fatte queste premesse, molte risposte evidenziano problematiche attuali e irrisolte anche in Italia

Tra queste: 
lo scarso collegamento tra i servizi per i minori e quelli per gli adulti
Another issue many would like to see highlighted is the transition from children’s to adult services since this is relevant across many of the selected themes
A total of 40 comments mention transition issues and highlight the challenges people with an ASC are facing when they are no longer eligible for children’s support services:
Many respondents highlight the adequate or better services currently available to children with an ASC, but many say that once a child reaches adulthood the provisions diminish and in many areas, according to responses, are seriously lacking.
I was shocked that there was little coherent collection of data from children’s services to adults services, or proper assessment of future needs. It would be very easy for residents to fall through the net after they left school, and very hard for families struggling to cope. (No sector selected)

lo scarso supporto che si dà alle famiglie che si fanno carico degli adulti con autismo
There are also many suggestions to put more emphasis on supporting those who care for adults with an ASC, as it is felt that they receive too little support even though they are often indispensable to adults with an ASC.
None of my concerns have yet been successfully addressed at local level, I'm still fighting, but I have to work full time to support my son 100% & keep a roof over our heads. I don't have the time to keep writing letters & speaking to people to get help (two years & more now). We seem to be 'left in the lurch'. (Family carer)

la scarsa formazione specifica sull’autismo dei professionisti dei servizi sociali e Sanitari,  l’assenza di servizi specifici per adulti con autismo e la necessità di crearli ex novo 
Services need to understand the needs of people with ASC. They need to appreciate that they do not fit neatly into existing service provisions, and that new services and supports may need to be created. (ASC professional)
We believe that every local authority in the UK needs a multidisciplinary ASC team, led by someone with experience and credibility within the field of providing services to people with autism and their families. (ASC professionals group)

la necessità di creare figure “alla pari” , quasi “amici a pagamento” che  aiutino a vivere momenti ed esperienze al di fuori della famiglia
According to many (45 comments) the best way to help adults with an ASC where they live is to have someone supporting them whenever they need this. Throughout the comments such a person is called a mentor, a buddy, a key worker, a support worker, an advocate or a personal assistant. One-to-one support is seen as an effective way to help people with an ASC overcome barriers and to take some pressure off family carers.

la necessità di fare formazione agli operatori della Sanità, in particolare agli psichiatri.
Una testimonianza parla addirittura di un’attesa di 46 anni per la diagnosi
To return to the question of diagnosis in our case it took 46 years. I had tried and tried to get a diagnosis because we suspected Autism - no one would listen. One psychiatrist even said to me "How could a diagnosis help? It wouldn't alter your situation.” (Family carer)
Una grossa preoccupazione riguarda la prescrizione incongrua di psicofarmaci
There is concern about ASC being over-medicated because mental health professionals are unsure of the condition. It is also suggested that the relationship between ASC and genuine mental health problems needs to be properly recognised:
Better training for health professionals
Better training for health professionals (155 comments), at every level and in every place where healthcare is offered, is a running theme in a great many responses.
It is argued that failures of this basic understanding are leading to people with an ASC not receiving the treatment they need, or receiving treatment that is inappropriate and even harmful.
The training of mental health professionals, as mentioned earlier, is also an issue for respondents, with many reporting either that ASC is misdiagnosed or that, once diagnosed, mental health professionals are unable to respond to it:
Another theme of many stories is the relationship between ASC and other mental health problems, and the problems resulting from efforts to medicate people who have multiple problems in parallel with ASC.

L’accesso al lavoro e il mantenimento dello stesso risulta poco o nulla  supportato anche per i soggetti con grandi abilità
Employment is another key area. It is often vitally important to people with ASC because it provides structure and an opportunity to interact with others when otherwise they could be without meaning to their lives and isolated. (Family carer)

The external reference group identified the following as key areas where action is needed: a) ensuring that adults with an ASC can access the particular support that they need to find and hold on to a job b) improving awareness of ASC among employers and supporting them to make reasonable adjustments in the workplace for adults with an ASC c) making the benefits and tax credits system more accessible for adults with an ASC d) making training and educational opportunities more accessible for adults with an ASC.

Mentors for people with an ASC can be useful to help them through any difficulties that they encounter as and when they encounter them; equally, mentors, advocates or mediators may be able to help employers and colleagues understand how people with an ASC may be different to them. This again comes back to the need for employer awareness and support, which is mentioned in 69 comments.

 Anche la perdita di benefici economici in seguito all’inserimento nel lavoro ( da noi sarebbe la pensione di invalidità) è considerato un problema, in quanto è poi difficile averli di nuovo se si perde il lavoro

One of the main problems illustrated in responses is the anxiety that getting a job may lead to benefits being cut, and if the job proves unsuitable or unsustainable there are difficulties involved in going back on to benefits.

Se il 15% delle persone nello spettro ha un lavoro a tempo pieno, considerando anche soggetti con elevate abilità, è una percentuale davvero bassa

It is pointed out that only 15% of adults with an ASC are in full time employment, though many more are capable and would like to work if they had the necessary support.

Viene rilevata la necessità di preparare sia i datori di lavoro che i colleghi ad accogliere il lavoratore con autismo
It is apparent that without some degree of specialist training and support to both the person with an ASC and the employer or immediate work supervisor, many adults with ASC will experience repeated failures in the workplace.

Molte risposte indicano la necessità di istituire degli schemi di supporto all’inserimento lavorativo con l’istituzione di figure specifiche a ciò deputate
One approach mentioned and approved by respondents (48 comments) is to establish coaching, mentoring and ‘buddy’ schemes.

E questo non solo all’inizio, ma anche al bisogno a tempo indeterminato
It is also recommended by many that support should be made available on an ongoing basis so that an employer can pick up the telephone and seek advice whenever a question or issue arises.


Viene suggerito di istituire degli incentivi ai datori di lavoro, nel caso assumano
persone con disturbi dello spettro autistico 
Respondents suggest, for example, that employers should receive financial incentives to employ people with an ASC:
In Italia forse basterebbe riconoscere a persone con disturbi dello spettro ad alto funzionamento, non diagnosticate sino ad ora, un certo grado di invalidità e per questo il datore di lavoro adempirebbe all’obbligo di assumere la quota di invalidi

Viene sottolineato infine come certi comportamenti patologici non riconosciuti come tali possano portare addirittura alla detenzione e c’è il sospetto che nelle prigioni ci siano molti detenuti che in realtà sono persone affette da autismo che avrebbero bisogno di essere curate anziché punite
The government should look at the prison system to see how many people with an ASC are in prison inappropriately, which leads to a need for greater police and judicial system awareness. (A mixed group of people)


IN CONCLUSIONE: L’INIZIATIVA DEL NHS E’ MOLTO OPPORTUNA E LODEVOLE.
ATTENDIAMO LE LINEE GUIDA DI PRIMAVERA E SPERIAMO CHE TALE INIZIATIVA VENGA IMITATA DA ALTRE NAZIONI, ITALIA COMPRESA






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