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.
He has extensive experience of educational consultancy with both organisations and individuals.
He runs Emergent Divergence which can be found on multiple social media platforms, and is a regular educator and presenter on Aucademy.
He is co-author of the "Creating Autistic Suffering" series, found on his website emergentdivergence.com, and is also a published poet.
To make contact about his consultancy and mentoring services, visit http://www.dghneurodivergentconsultancy.co.uk
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16 Responses
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.
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.
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.
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.
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.
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.
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!
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.
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.
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?
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.
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.
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.
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.