Misdiagnosis and mistreatment of autistics in the mental health system3 min read

As autistic people, many of us have found our coun­try’s mental health sys­tems a reg­ular fea­ture of our lives. Many of us expe­ri­ence mental health issues throughout our lives; often caused by a life­time of masking undi­ag­nosed autism, but also because our needs as autis­tics are largely ignored.

A common theme I see reported by those of us in these sys­tems is that of mis­di­ag­nosis and mis­treat­ment. Those seeking diag­nosis are often diag­nosed with mental health con­di­tions that per­haps share traits with autism (this seems to be espe­cially preva­lent amongst women and people assigned female at birth). Others are treated as a nui­sance because their brains do not have the desired response to med­ica­tion and ther­a­pies.

My per­sonal expe­ri­ence led me through years of mis­di­ag­nosis as having a per­son­ality dis­order. Even after I received my formal autism diag­nosis, my psy­chi­a­trist des­per­ately clung to the diag­nosis of EUPD or Emotionally Unstable Personality Disorder (aka Borderline Personality Disorder). This label was used to accuse me of being an unco­op­er­a­tive and dif­fi­cult patient.

I sure many of you can relate when I say that there is a sig­nif­i­cant amount of stigma amongst pro­fes­sionals when it comes to people per­ceived to have a per­son­ality dis­order. This mis­di­ag­nosis fol­lowed me for years, and made my time in the system con­fronta­tional and unhelpful until I was able to shed the diag­nosis of EUPD.

Inpatient treat­ment can be espe­cially com­plex. Some inpa­tients are accused of being chal­lenging patients, others find them­selves incar­cer­ated in the system for months or even years. Some find that even at the moment of most severe crisis, they can not get access to the sup­port they need to recover.

This problem seems (in my opinion) to arise from a lack of under­standing of autism, espe­cially autism in adults. Many view autism as a con­di­tion of child­hood, seeming to believe that we will grow out of it as we age. Others con­sis­tently infan­tilize us because of the traits we do not mask.

As men­tioned pre­vi­ously, women and people assigned female at birth, as well as ethnic minori­ties face a par­tic­u­larly tough path to diag­nosis. Research into autism has typ­i­cally been based around young, white, male chil­dren; and this is what they have used to develop the diag­nostic cri­teria for decades.

These issues in the diag­nostic process present huge bar­riers. Individuals forced to live without diag­nosis often learn to mask their autistic traits as a sur­vival mech­a­nism. It isn’t unrea­son­able to wonder if these gaps in the diag­nostic process have con­tributed to the trou­blingly high sui­cide rate amongst autistic adults and teens.

So how can we get autistic adults the diag­nosis and sup­port that they require?

Advocacy.

We need more funding for autistic led advo­cacy net­works. We need to give those net­works the resources they need to pro­vide inde­pen­dent advo­cates to all who require them. In an ideal world, all people going through the diag­nostic process would have an advo­cate along­side them, ensuring that their case is con­sid­ered fairly and appro­priate sup­port is offered.

Another impor­tant mea­sure to mit­i­gate mis­di­ag­nosis and mis­treat­ment is ser­vice user involve­ment. Policy should always be guided by the expe­ri­ence of the people who have been (or cur­rently are) in the system. Service user involve­ment is extremely valu­able, and can often have a sig­nif­i­cant impact on how ser­vices are com­mis­sioned and imple­mented.

Finally, we need autis­tics from all back­grounds to make their voices heard. The autistic com­mu­nity is incred­ibly diverse and inter­sec­tional. We need to speak loudly enough to make pro­fes­sionals adjust the diag­nostic cri­teria to be more inclu­sive of all autistic people.

So many of us found our diag­nosis while in the mental health system, which is why the level of mis­di­ag­nosis and mis­treat­ment that exists there is so con­cerning.

I dream of a world where people don’t have to live with self-diagnosis. I dream of a world where people have fair access to formal diag­nosis and sup­port, and fair treat­ment for any co-occurring con­di­tions.

The neu­ro­di­ver­sity and dis­ability rights move­ment is making huge strides in pro­moting the cause of appro­priate and fair access to diag­nosis. It is vital that we keep this momentum going and cap­i­talise on the wealth of expe­ri­ence that we have between us as a com­mu­nity.

David Gray-Hammond
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16 Comments

  1. Excellent and infor­ma­tive post. I have expe­ri­enced much of the same, having been diag­nosed with all manner of mental ill­nesses but not as an autist until my 50s. Once I dis­cov­ered I am in fact neu­ro­di­ver­gent every­thing I expe­ri­enced throughout my life made com­plete sense, the melt­downs, the abuse, the lack of social skills, dif­fi­culty in school, and so on. It would have been most helpful for me to have been diag­nosed prop­erly early on. It would have been life-changing.

    1. Author

      I often wonder how dif­ferent my life would have looked had I recieved a diag­nosis when my mother first spotted my autism as a child. Instead I was con­sis­tently failed by school mental health ser­vices. When I finally recieved my diag­nosis almost 4 years ago, there was very little sup­port out there for me as a newly diag­nosed adult.

    2. Sometimes I think an early diag­nosis could have helped, but look at the abuse people who are diag­nosed young expe­ri­ence today from an abu­sive mental health­care system trying to bully them into pre­tending they are NT with mind­less ABA garbage.
      Diagnosed or not, we are damned by the mental health­care system either way.

      The pur­pose of mental health­care is to enforce com­pli­ance with social norms, it only exists to val­i­date ther­a­pists’ imma­ture emo­tional needs by making them feel wor­shipped and “in con­trol”. There is no help that can be obtained through such a system, it’s all a big joke, an “NT social game” being played with peo­ples’ lives on a grand scale. That’s all.

  2. Thank you for writing this enlight­ened piece. My first impulse is to breath­lessly share it with my imme­diate family who were both ashamed and so hopeful when I was hos­pi­tal­ized for all the afore men­tioned diag­noses, but never the real one, autism. I am not for­mally diag­nosed yet but I know I am autistic. I learned to hide when stim­ming at a very young age. I func­tioned fairly well by masking but there were always clues. Rocking until the chairs broke, drinking to fit in, loving to move because the pres­sure to per­form socially at higher, more demanding levels would become unbear­able. Suicide attempts. Hospitalization and mis­di­ag­nosis. Repeatedly, to include per­son­ality dis­order. As an RN, I knew what that meant and even asked myself if that’s what’s wrong with me. When I started reading The Aspergian, it all fell into place. I am autistic and female. Discounted. Unheard.

    1. Author

      Your men­tion of “drinking to fit in” strikes a real chord for me. I engaged in a lot of sub­stance misuse and drinking in my early twen­ties, and while there were a lot of com­pli­cated rea­sons for that, fit­ting in was a big factor.

      1. NTs pre­tend sub­stance abuse is bad, then they will use shame & peer pres­sure to try to force you to do it with them. Just another one of their nasty little “social games” that they pre­tend is harm­less, which is actu­ally any­thing but. Ever tried saying “no thank you” to drinking at a party or even worse, at work? Try it & see how hate­fully they respond.
        All NT “social games” are fuelled by mind­less hate if you look at them closely. They just think they can con­ceal it with their con­stant fake smiles.

        1. Author

          I’m not sure I feel com­fort­able painting NTs with such a broad brush, but I cer­tainly have noticed the soci­etal pres­sure to drink and abuse sub­stances (I myself am nearly 4 years sober from addic­tion). There is a lot of iso­la­tion for people who don’t drink or use drugs, but if you drink or use too much, there is even more iso­la­tion!

          1. Congratulations on sobriety. I don’t know how you stand it. Is it sober-sober or California-sober? (still smokes weed)?I moved to PA because mar­i­juana is med­ically allowed for autis­tics young & old here. I don’t see smoking one joint a day as “sub­stance abuse”, I see it as the only thing that makes life bear­able.
            And I think it’s sweet that you don’t think NTs are all the same, but they are. They are all just very simple little equa­tions, with only min­imal surface-variations among them. I have studied them very closely all my life; they are my “spe­cial autistic interest”. They are all the same & all incred­ibly dull. It breaks my heart when autis­tics long to be like them; it’s like an awk­ward but­terfly longing to become a par­a­sitic blood­worm.

          2. Author

            I would call it sober-sober, I don’t smoke weed, or drink alcohol, or take any­thing mind altering beyond the antipsy­chotics I am pre­scribed for my psy­chosis.

          3. Seriously David, why do you think mental health “experts” con­stantly insist that “ALL HUMANS HAVE THE SAME EMOTIONAL NEEDS & WANTS”? We don’t. It’s just NTs way of trying to *enforce con­for­mity*, it’s got nothing to do with mental health. That’s exactly why it’s so hard for us to obtain an autism diag­nosis; because they insist on judging our emo­tions according to NT stan­dards rather than admit that we are not like them. So I’m not the only one who thinks NTs are all the same; NT ther­a­pists con­stantly insist on it, so much so that they end up harming the few people who actu­ally are dif­ferent: US.
            If you don’t feel com­fort­able painting all NTs with the same broad brush, how do you feel about the fact that that’s exactly what the entire mental health (harm) com­mu­nity does?



  3. I have com­pletely given up on ever obtaining an offi­cial diag­nosis. The harder I try to coop­erate with ther­a­pists, the more they accuse me of “pre­tending to be dif­ferent in order to get atten­tion” because NTs are con­gen­i­tally inca­pable of doing any­thing for any reason *but* to get atten­tion, there­fore they are inca­pable of con­sid­ering that anyone else might ever have any other reason for any­thing.
    Also they are ter­ri­fied to admit that a patient has a life­long dis­order that has been pre­vi­ously mis­di­ag­nosed because they care more about “pro­tecting their pro­fes­sion” from the pos­si­bility of any ther­a­pist ever beng told they were wrong, espe­cially if there’s a chance it may qualify the patient for retroac­tive pay­ments through the dis­ability care system. Therapists are all NTs & the only hope an autistic person has of ever being under­stood is by other autistic people, so seeking a cor­rect diag­nosis is not only a waste of time, but in my case actu­ally resulted in years of mali­cious retal­i­a­tion by NT ther­a­pists whose only con­cern was to “pro­tect their pro­fes­sion”.
    I will never seek help or a formal diag­nosis again because the risk of encoun­tering more NT ther­a­pists who only want to harm me far out­weighs any com­fort or help that I might receive from a formal diag­nosis.
    “Borderline Personality Disorder” is just NT clin­ical speak for “I despise this patient & I will screw them over every way I pos­sibly can in hopes of pushing them to sui­cide.”
    Doctors, espe­cially doc­tors of mental health, do not care about helping any­body but them­selves. They care about being wor­shipped, con­trol­ling others, & pun­ishing anyone they dis­like with cruel & mali­cious mis­di­ag­noses. The system is com­pletely stacked against the patient & engaging with it only results in per­pet­u­ally esca­lating harm.
    Nrurotypicals enjoy therapy because they enjoy atten­tion & being told what to do & how to feel. Their innate social instinct is to be com­pliant, which pleases and val­i­dates their ther­a­pists. Autistics lack these innate qual­i­ties of socia com­pli­ance & val­i­dating “authority fig­ures” with the wor­ship they crave, so we are labled with BDP “Bad Person Disorder”. It’s hope­less. Trying to help NT ther­a­pists under­stand that we are dif­ferent from them only makes them furious & vin­dic­tive.

  4. I’m sorry to hear you went through that.

    And saying “you’re dif­fi­cult because BPD” sounds like such a bad thing to say. When someone has BPD, they still do things for a reason, and labeling them as “dif­fi­cult” sounds like an excuse to stop trying to under­stand.

    1. Thank you. That’s very insightful. The label of BDP is given to any patient a ther­a­pist dis­likes. Read the DSM cri­teria, it’s all com­pletely sub­jec­tive based on the emo­tions of the ther­a­pist, not the patient. That’s why I call it Bad Person Disorder: it’s just a lazy ther­a­pists way of saying “I’ve decided this is just a bad person, so I’m going to screw them instead of try to help them.” You don’t have to be “dif­fi­cult” to receive it, merely insuf­fi­ciently wor­shipful of the ther­a­pist. Well, sorry, I can’t pre­tend to wor­ship people who are so much stu­pider than me con­vinc­ingly because I’M AUTISTIC. Therapists have always called me a liar when I try to explain the pre­pos­terous life I have been forced to live in order to acco­mo­date my autism. Like, they *weren’t even there*, but they’ll diag­nose me as a liar within two min­utes of meeting me because they’re so sure that nobody could sur­vive what I’ve been through. It’s like their only goal is to drive me to sui­cide. It’s no coin­ci­dence that so many autis­tics die by sui­cide; look at what they do to us when we seek help. But they use sui­cidal ideation as another jus­ti­fi­ca­tion for diag­nosing Bad Person Disorder, because they think people who want to die deserve to be shamed & pun­ished for it, never helped. I hon­estly think the goal of the entire mental health industry is to push people to sui­cide, at least in the low-income sector. We save the gov­ern­ment money if we die.

      1. That’s awful. I’m so sorry to hear that you’ve had such ego­cen­tric and unhelpful ther­a­pists. Therapy should be about trying to con­nect with the patient and help them gain skills, not assigning a label because the ther­a­pist per­son­ally dis­likes or doesn’t trust the patient.

        Autistic people live in a world that is not built for us and does not really under­stand us. And often doesn’t try to under­stand, either. I think this results in a silent crisis. So many autis­tics are strug­gling with untreated (or inad­e­quately treated) mental health issues and sui­cidal thoughts. It’s not OK.

        My life’s work is to try to push the world to become kinder and more under­standing towards those who are dif­ferent, espe­cially towards autis­tics.

        I’m lucky: I found a ther­a­pist who (mostly) under­stands me and wants me to have a good autistic life. I wish every autistic person in need could have that.

        In your com­ment, you sound sad and alone. I hope things can get better for you.

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