Gunn Strand Hutchinson

Bør utviklingshemming være en diagnose?

Bør "psykisk utviklingshemning" erstattes med en annen benevnelse? Bør en fjerne "psykisk utviklingshemning" som medisinsk diagnose? Spørsmålene opptar NFUs landsstyre som har bedt om tilbakemeldinger fra organisasjonen.

Av Gunn Strand Hutchinson 

To spørsmål landsstyret i NFU ønsker dialog om

Landsstyret har stilt lokal- og fylkeslag i NFU to spørsmål: For det første om vi bør arbeide for å endre betegnelsen «utviklingshemming» og hva den i så fall skal være? For det andre om vi skal arbeide for å få fjernet tilstanden som medisinsk diagnose uavhengig av hva betegnelsen er?

Hvorfor ønsker landsstyret en dialog om disse spørsmål?

Opp gjennom årene har det å ha en medfødt eller tidlig ervervet kognitiv funksjonsnedsettelse hatt mange navn. I 1966 ble «psykisk utviklingshemming» den nye betegnelsen som erstattet «evneveik» og «åndssvak». Begrunnelsen var å bli kvitt den stempling de gamle betegnelser medførte. Siden da har dette vært en diagnose i diagnosesystemet ICD10 og plassert under psykiatriske diagnoser.

Vår organisasjon ble ved oppstart i 1967 kalt Norsk Forbund for Psykisk Utviklingshemmede (NFPU). I 1997 ble navnet endret til Norsk Forbund for Utviklingshemmede (NFU). Begrunnelsen var både uklarheter i forståelsen av «psykisk» og at betegnelsen var stigmatiserende. Vår organisasjon har fra 1997 arbeidet for at også fagmiljøer og folk flest skal endre betegnelse til «utviklingshemming». Dette er i stor grad oppnådd selv om «psykisk utviklingshemming» dukker opp i en del sammenhenger og som sagt også fortsatt er en betegnelse i diagnosesystemet.

Vi i landsstyret ønsker å involvere hele organisasjonen i en dialog om tiden nå er moden for å endre betegnelse. «Hemming» er blitt belastende og stigmatiserende og mange vegrer seg mot å bli omtalt som en person med utviklingshemming.. Språk påvirker tanker og handlinger og er slik i seg selv en barriere som setter begrensninger for hvordan man tenker om de som blir omtalt som å ha en utviklingshemming.

Det har også skjedd endringer i engelskspråklige betegnelser og endringer i de andre nordiske land. I engelskspråklige land brukes stadig oftere «intellectual disability». Dette er en betegnelse som Inclusion International også bruker. Vår søsterorganisasjon i Sverige bruker «intellektuell funksjonsnedsettelse/utviklingsforstyrrelse» som betegnelse. Det er nærliggende å tenke at dersom vi skal endre betegnelse kan det bli til «intellektuell funksjonsnedsettelse» eller «intellektuell utviklingsforstyrrelse».

Det er også slik at WHO har gjennomgått diagnosesystemet og endret det til ICD11. Dette skal nå oversettes til norsk og det er dermed ei gunstig tid å spille inn en ny betegnelse. I den engelskspråklige utgaven av ICD11 er betegnelsen endret fra «mental retardation» til disorders of intellectual development». Det kan oversettes til norsk som «forstyrrelse i intellektuell utvikling».

Landsstyret har også bedt dere diskutere om vi bør jobbe for å få fjernet utviklingshemming som en diagnose. Dette vil være et arbeid som vil gå over lengre tid. Begrunnelsen for endring er at utviklingshemming ikke er en psykisk lidelse eller somatisk sykdom. Det er en tilstand med nedsatt kognitiv kapasitet. Tilstanden må kunne sees som en del av det menneskelige mangfold. For eksempel er kortvoksthet ingen diagnose, men en beskrivelse av høyde. Dersom kvinner er under 150 cm og menn under 161 cm betegnes deres høyde som kortvokst. På samme måte kan eventuelt grenser for IQ tester og adaptive ADL ferdigheter settes for å kunne omtale den kognitive tilstand som utviklingshemming uten at det gjøres til en medisinsk diagnose.

Mennesker med utviklingshemming kan bli somatisk syke eller få psykiske lidelser, og det er da behov for medisinsk behandling enten fra somatikk eller psykiatri. Man er imidlertid ikke syke i kraft av å ha en kognitiv funksjonsnedsettelse. Tiltak som kan minke funksjonsnedsettelse har sine røtter i pedagogikk, opplæring og støtte til deltakelse. I tillegg dreier det seg om å fjerne samfunnsmessige barrierer som gjør det enklere å orientere seg og delta og ikke minst endre holdninger som diskriminerer og bidrar til å hindre full deltakelse. I dette inngår også språk og betegnelser som brukes om mennesker og det å bli betraktet som syk hele livet fordi man har en kognitiv funksjonsnedsettelse. I en relasjonell forståelse av funksjonshemming gjelder det både å styrke forutsetningene og fjerne barrierer. Det å bli betegnet som syk er med på å bygge barrierer som forstørrer funksjonshemmingen.

Landsstyret håper at mange vil engasjere seg i disse spørsmål og gi uttrykk for synspunkter. I første omgang dreier det seg om vi skal endre betegnelsen «utviklingshemming». Det andre spørsmålet vi har stilt om å fjerne betegnelsen som diagnose er et mer langsiktig arbeid hvor vi også må samarbeide med våre internasjonale organisasjoner opp mot WHO.

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  • 2022-03-29 har autime, mente jeg. jeg skrev "hat", jeg mente å skrive "har". Monica P Jansen
  • 2022-03-29 jeg hat autisme men har ikke utviklingshemming, men autisme er en utviklingsforstyrrelse. jeg håper at NFU da blir også for oss uten utviklingshemming også, vi som foreksempel bare har høytfunerende autisme og sosiale vansker og bor på omsorgsbolig. jeg har mange venner som er medlem i NFU. Monica P Jansen
  • 2022-03-26 Hei, Så bra at dere går grundig inn i dette! Det er en vanskelig og veldig viktig samtale og bestemmelse å ta. Både ‘psykisk utviklingshemming’ og ‘utviklingshemmet’ er upresise, diskriminerende, belastede og belastende begrep. Det er vel bevilgende myndigheter som har behov for at legene opererer med diagnosen, kanskje? Det bør kunne løses på en annen måte. Steinar: vi snakker ikke om en gruppe mennesker, men om en skapt kategori. Jeg synes Heidi sitt innlegg her nedenfor var veldig tankevekkende. Lise Lundh
  • 2022-03-26 Hei, Så bra at dere går grundig inn i dette - endelig! Det er en vanskelig og veldig viktig samtale og bestemmelse å ta. Både ‘psykisk utviklingshemming’ og ‘utviklingshemmet’ er upresise, diskriminerende, belastede og belastende begrep. Steinar: vi snakker ikke om en gruppe, men om en skapt kategori. Jeg synes Heidi sitt innlegg her nedenfor var tankevekkende og godt. Lise Lundh
  • 2022-03-18 M. Forstyrrelse blir brukt i dag, men de er ikke utviklingshemmet. Derimot sliter gruppen med sosial fungering. Steinar Wangen
  • 2022-03-17 Synes ordet "forstyrrelse" gir en dårlig smak i munnen. Setter pris på bruken av ordene funksjonsnedsettelse og funksjonsvariasjon. Mennesker med ulike typer utfordringer innenfor denne kategorien har nettopp det du sier, andre måter å fungere kognitivt på. Så kan somatiske ting forekomme i tillegg, men når det gjelder den kognitive fungeringen handler det mest om ulike variasjoner. Så kognisjonsvariasjon eller funksjonsnedsatt føles mer riktig å si. Mye mer enn å bruke ord som hemmet og forstyrrelse, da disse har negative konnotasjoner historisk sett. Mange har opplevd mobbing gjennom bruk av ord som "hemma" eller kan sette i gang negative tankerekker om man ser på det som at man er "forstyrret". Det er lett p glemme at det kan medføre mange psykiske plager gjennom perspektiver og negativt ordbruk. Først og fremst må vi fremme det faktum at det ikke er noe galt med personene i seg selv. Man er som man er, rett og slett. En sykeliggjøring av ulikhetene blant mennesker som ikke er livstruende eller helseskadelige ulikheter er ikke helt nødvendig i mine øyne. Samtidig er det viktig å påpeke nettopp de utfordringer som kan komme av å leve i et samfunn der det forventes at man skal fungere på en viss måte. Derav nedsatt fungering i lys av samfunnet vi lever i, ikke i forbindelse med hvem vi er som mennesker i seg selv. Min måte å fungere på er ikke det A4-samfunnet rundt meg ønsker, de vil at jeg skal passe inn. Hilsen autistisk og bipolar ADHD-person (jeg regner med autisme er en del av denne diskusjonen, så jeg føler jeg har noe jeg skulle sagt om eget perspektiv her og generelt hva jeg føler om hele diskursen rundt dette) M
  • 2022-03-15 Guro, du har rett i det. Det beklagelige er at både fagmiljøet og organnisasjoner legitimerer båstenkningen. Steinar Wangen
  • 2022-03-15 Jeg jobber som journalist og har hele tiden jobbet for å få folk i redaksjoner og ellers til å bruke "utviklingshemmet" og ikke "psykisk utviklingshemmet". Det er heller ikke en jobb som er ferdig ... Jeg tror stigmatiseringen og bruken som pekes på i ditt spørsmål til landsstyret, vil være uendret med ny beregnelse, så lenge man ikke samtidig endrer måten kommuner -den viktigste samfunnsaktøren for de fleste av oss- ikke endrer holdningen sin til en gruppe mennesker. En veldig differensiert og mangfoldig gruppe, som blir satt i bås. Ofte er den båsen også et sammensurium av rettigheter som bolig og hjelp til bistand og støttekontakt -alt tilmålt og bestemt etter stramme kommunale budsjetter. Jeg kunne ønske meg at mån i stedet påla kommuner å ha helt atskilte områder for boligforvaltning og dekning av andre behov hos mennesker med utviklingshemming. Guro
  • 2022-03-14 Har selv lettere pu, dem burde kalt det noe annet. Et handicap eller noe sånt. Sara
  • 2022-03-14 Jeg fikk diagnosen lett psysisk utviklingshemmed og di George syndrom i godt voksen alder. Når jeg ble født var jeg ikke prega av at noen kunne se det på mitt utsende. Jeg er glad for at jeg fikk den i voksen alder for da var det ingen som ga meg sær behandling. Jeg klarte meg fint på ungdomskolen og vidregående og så i jobb. Når jeg tok en tilfeldighvis blod prøve snudde alt seg for meg. Alle begynte Og se på meg som anderledes . Heldighvis ikke min familie. De har aldri sagt Heidi dette klarer du ikke fordi du er utviklingshemmed. Til slutt så mista jeg jobben min pga av diskriminering og jeg klarte aldri finne en ny jobb så da ble jeg ufør. Etter det her vil jeg si at hele mitt liv ble ødelagt og jeg føler på en skam at jeg ikke kan være endel av samfunnet. Godt voksne mennesker skal ikke sette andre i bås. Heidi
  • 2022-03-14 Det er ikke Norske myndigheter som setter diagnosen. Det er verdens helseorganisasjon (WHO) som gjør det gjennom utarbeidelse av ICD og myndighetene har lagt seg på en linje som sier at de legger seg på WHOS linje. Når ICD 11 kommer er det allerede bestemt at diagnosen psykisk utviklingshemmet blir fjernet og erstattes med intellektuell funksjonsnedsettelse som stammer fra det engelske intellectual disability. Personlig liker jeg denne betegnelsen dårlig fordi det minner meg om rettspsykiaterne fra straffesaker som diagnostiserte personer som hadde lavere IQ enn 36 som idioter. Steinar Wangen
  • 2022-03-14 Vedlegt følger et innlegg jeg hadde i BT i juni 2011 om nettopp dette. Har de samme synspunktene fortsatt, selv om jeg kanskje ville uttrykt meg litt anderledes om jeg skrev det i dag. "En spade er en spade. «I det hele tatt, hvorfor er det galt så bli psykiatrisk vurdert?» spør Eva Rognevik 10. juni i sitt innlegg som så glimrende blottlegger psykiaterens problematiske holdninger til eget fagfelt. La meg forsøke å svare. En stor gruppe i vårt samfunn har faktisk fått en psykiatrisk diagnose uten at de noensinne har vært i kontakt med en psykiater. Uten at det nødvendigvis feiler dem noe «psykisk» i det hele tatt. For denne gruppen er dette fatalt. Alle vet etterhvert hvor viktig det er å komme raskt til behandling i tilfelle hjerneslag. Ved tidlig inngripen og iherdig trening kan hjerneskader helbredes blandt annet ved at funksjoner flyttes fra et sted til et annet. Hjernen er et av de mest utviklingsbare organer vi har, særlig i ung alder. En gruppe hjerneskadde som imidlertid aldri får noe tilbud om trening, er den gruppen hjerneskadde som istedet ufrivillig havner i psykiatrien. For når den psykiatriske diagnosen foreligger, slutter legene å forholde seg til den påviste, fysiske hjerneskaden. Man må idag ut av landet for å finne miljøer som tar disse hjerneskadene på alvor og utformer treningsprogrammer som over tid kanskje kan ha en bedrende effekt på de berørte hjernefunksjonene. En spade er en spade og en hjerneskade er en hjerneskade. Hvorfor i all verden kalles da en hjerneskade for psykisk utviklingshemming (PUH)? Med dette grep flyttes pasienten fra somatikken til psykiatrien, på tross av sin påviste hjerneskade. Leser man diagnosekriteriene for PUH, fremgår det at pasienten har begrenet tenke- og slutningsevne, de lider faktisk og nettopp av, - ja, hjerneskade. Hvilken nytte treningsprogrammer for denne gruppen kan ha, hører vi iblandt om i media, når ildsjeler av foreldre står frem og forteller om sitt barns fremgang ved bruk av den kompetanse som finnes i utenlandske miljøer (for eksempel Doman, Handle). Hjelp får denne gruppen ihvertfall ikke av å ha blitt en del av den norske psykiatrien." Anne Karin Åkra
  • 2022-03-14 Det må gå an å sette et navn/betegnelse på dette handicapet i likhet med mange andre handicap. Mangler du en hånd, et ben eller en arm er du funksjonshemmet. Hvorfor unngå denne benevnelsen, - i enkelte tilfeller kan det være behov for å angi en underkategori til funksjonshemming. Dette vil jo gjelde alle med et eller annet handicap. Jeg skal dog si at jeg har all respekt for at det her finnes mye og mangt om alt for mye jeg ikke skjønner. Mvh,...Tom Tom Fr Johannessen
  • 2022-03-14 Hei Hva med å kalle det mennesker med ulike funksjonsvariasjoner👍 Mona Fagerås

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