Misdiagnosis of Missed ASD

Post Reply New Topic

I happened on this record of a parliamentary speech that addresses the relatively neglected topic misdiagnosis of autism, where the autism is missed and a misdiagnosis of another condition is made instead:

Because misdiagnosis is rarely discussed outside of forums like this, and even more rarely in the parliamentary scenario, it seemed worth posting here.

It would also interest me if one of our gifted academic members here (maybe you, SocOfAutism?) could design an informal "inhouse" survey on misdiagnosis that other members could respond to for our general interest? (If you are an established member in good bona fides standing, then you don't need special permission from Alex to do this, as your street cred is known).

The actual speech was made at Westminster (the British parliament) in 2004. (The full text is in the next post in this thread).

Angela Browning Vice-Chair, Conservative Party 3:30 pm, 8th September 2004

I am pleased to see the Under-Secretary of State for Health, Dr. Ladyman in his place in what is becoming an almost annual occasion, for which I make no apology. You will recall, Mr. Deputy Speaker, that I secured a debate on Asperger's syndrome on 10 September 2003 to discuss the impact on adults and adolescents who had been misdiagnosed by psychiatrists, particularly provincial psychiatrists, who confused their autistic behaviour with schizophrenia. They were the, to their detriment, treated as schizophrenics, with all the drugs that that treatment involves. Difficulties then arose in managing their lives, and damage was done.

To set the scene, I shall repeat something that I said at the beginning of my speech last year because it is still relevant to today's debate: very few provincial psychiatrists have been trained in either the diagnosis or the management of Asperger's syndrome; even fewer have gained the necessary experience in their working lives to be able to differentiate between a mental health condition and what many of us would regard as normal autistic behaviour, which sometimes even professional psychiatrists might well interpret as something quite different.

Very few psychiatrists in this country have the expertise to differentiate between autism and schizophrenia, and yet, day after day, people with Asperger's syndrome are admitted to mental health hospitals and are diagnosed and treated by people with that lack of experience. I want to build on that point this afternoon because it is still as much a problem today as it was when I raised the matter last year. Indeed, my hon. Friend Mr. Lidington, who is sitting next to me, told the House on 30 April of the tragic case of his constituent, Mr. Piers Bolduc, a young man with Asperger's syndrome who had been diagnosed quite mistakenly as schizophrenic and who had been in Broadmoor hospital for 10 years. As a result of my hon. Friend's intervention—I know that the Minister is familiar with this case—Piers was moved to the Hayes unit, which is a much more appropriate placement for him. With permission, I shall read part of a fax that his mother sent to me this morning when she saw that the debate was going to take place. She wrote:

"After one month there he is doing his laundry, helping on kitchen cleaning duties, hoovering, kicked a football about outside, played scrabble, monopoly and chess and has even made some design patterns on the computer . . . In Broadmoor he just shuffled from his windowless bedroom to the dayroom and tried to keep himself safe for ten years."

That sums up what can be done for adults with Asperger's syndrome when they are given the appropriate help, support and treatment, but it also signifies the desperate vulnerability of these people and the damage done to them when their condition is not recognised by medical professionals.

I singled out provincial psychiatrists, but I now want to discuss some of the other problems that psychiatrists acting in various areas of life are causing and that are affecting adults with Asperger's syndrome. This is not just a question of health. People with Asperger's syndrome get caught up in the court system and find themselves in prison. They also become involved in tribunals fighting for benefits or for appropriate packages of support. I particularly want to mention the case of Mr. X. It would not be appropriate to name him because his case is likely to come before the courts.

Mr. X is a married man with Asperger's syndrome who ran his own business and fell foul of the Court of Protection and other parts of our legal system. As a result, a psychiatrist attempted to pass an opinion on Asperger's syndrome without understanding the condition and without a working knowledge of the specialism. I advised the spouse of Mr. X to inquire about the background and qualifications of that psychiatrist who was appearing as an expert witness against him. When pressed, the psychiatrist withdrew because it became quite clear that he had no expertise in Asperger's syndrome at all, yet he was identified as someone who was available at huge remuneration to himself to appear as an expert witness in legal cases. That, too, gives cause for concern.

These are serious matters. These are life-changing circumstances that affect people with Asperger's syndrome. I particularly want to raise my concern about the medical professionals who put themselves forward in court cases as expert witnesses against the person with Asperger's, causing havoc to their lives and infringing their human rights. We have already a classic example of what happens when so-called medical experts put themselves forward as expert witnesses without the proper qualification and validity in the cases of Munchausen's syndrome with which the Minister will be familiar. This is an area in which he should be personally involved. He should talk to the health bodies to ensure that we do not have these people who quite clearly see a lucrative future for themselves, but a future that is bleak for the person against whom they speak.


Hansard source
(Citation: HC Deb, 8 September 2004, c308WH)
Annotations

i agree that a survey could be illuminating/validating. ive been given schizophrenia, schizotypal, borderline, bi-polar, and social anxiety as incorrect primary diagnoses.

The best study I was able to find on this was by 3 Japanese researchers (Takara et al) and is called:

How and Why is Autism Spectrum Disorder Misdiagnosed in Adult Patients? - From Diagnostic Problem to Management for Adjustment. Published 2015 in Mental Health and Family Medicine

It is available on Pubmed, Academia and Google Scholar.

Oh lovely!! Thanks so much for this! I will definitely be reading this in a second

I've gotten: 1.)GAD & 1.2.)OCD & 1.3.) PTSD diagnosis
2.) "Just being a f*****g weirdo" (not in those words) diagnosis
3.) "You really need to get over it, but somehow still traumatized so I guess" <- PTSD (again)
4.) "I can't help you" followed by "but you're too smart to be autistic anyways"<- lol- try and be a teensy bit less condescending kay? thxs .
5.) "You're definitely autistic, but this is off the record so ..." <- didn't have insurance to cover it so it wasn't "formal".

I'm very curious to see more info data about this!

I have not to my knowledge been diagnosed as autistic, however I did spend 6 of my 12 year in school in special-ed classes. I have been officially diagnosed with major depression, dysthymic disorder, generalized anxiety disorder, myoclonus, strabismus, amblyopia & so on. All of these conditions are frequently comorbid with autism as well as having very uneven intellectual abilities & an extremely flat affect & limited emotional expression. I get overwhelmed easily & though I don't seem to have the violent tantrum like meltdowns I do have meltdowns in the form of frequent crying spells when overloaded either sensory or given an unbearable load for me as well as burnout where I cry virtually all day long for days at a time. This goes on even while I work, I have learned how to cope with this & still keep working safely which may seem unlikely given my line of work but I have learned to control the intensity of my crying in order to keep my eyes sufficiently clear. I also suffer from PTSD from abuse received during my school years.

I have all these conditions that can be comorbid with autism but no official autism diagnosis. I have been treated for depression & anxiety with very little positive effect & may have done more harm than good

You might relate to this:

https://spectrumnews.org/features/deep- ... ost-girls/

I guess it doesn't seem to display my gender & some people assume that I'm female thinking my online name is geranium. I'm actually male. My online name frequently gets confused with geranium which is a flower, germanium on the other hand is an element used in some semiconductors. One of my hobbies has to do with electronics.

This name has a lot on meanings to me though besides just being an element used in electronics. It's history in electronics success mirror my history in success as a person as well as the types of successes that I seem to be able to succeed in. It also has mirrored my failings to such a degree that for many years I felt totally worthless. Germanium largely fell out of use in audio electronics & I couldn't find or keep work. Germanium finally started to be used as an element used in the making of computer processor's, anouther of my hobbies, at about the same time that I found work that I could do consistently well enough at that I could at least reasonable expect to be able to keep my job. Germanium was used as a supporting element & not the main semiconductor in these processors & I view myself in supporting roles not lead roles in types of work & that is where I seem to do well.

Like germanium is used as a support for silicon in processor's I germanium the person looked for ways to improve the sound of solid state amplifiers which happen to be silicon based.

As you can see there is a huge connection to my online namesake.

Thank you for the link though b19. I did look at it.

Maybe you were assuming that I was female especially given my writing conserning my emotional states where crying is a frequent condition for me, I can understand that how one might draw that conclusion.

This is a good topic.

I would add to this that "comorbid conditions" are also a problem. Many people have been diagnosed with comorbid conditions, which are generally supposed to be independent of one another. Such as being nearsighted and having idiopathic urticaria (hives). Some conditions such as anxiety, depression, OCD and PTSD can be easily dependent on autism. For example, one is made anxious because of expectations and environments that are out of control. Other conditions, such as ADHD and bipolar disorder, and personality disorders, are suspicious when they exist WITH autism. Too many of the symptoms overlap. If a person is autistic, I would think it would be VERY RARE to also be bipolar, yet we have a lot of people with those two diagnoses here. But if you think about how autistic people sometimes have a tremendous amount of energy and sometimes no energy, depending on what they are doing and what they are around- they could seem like a bipolar person to someone who isn't too familiar with autism.

We could do a WP survey on this topic, but I'm already seeing a ton of diagnoses. We would have to group some of these together for it to make sense.

I fixed the gender display issue

I often look at what is causing my anxiety and I realize it's my need for control and when I don't have control, I get anxious. I also get anxiety when I can't figure things out or when I am not being understood and I am trying to meet someone's expectations. I also get anxiety from not knowing where to start and having a hard time breaking it into smaller pieces. Also I think mu learning style causes me it too because it's not the way my brain works so work modification helped. People not listening to me or lot of chaos also gives me anxiety. Also my son's whining makes me anxious and when he doesn't take no for an answer. I also had some social anxiety in 4th-6th grade because I was trying to be normal and had to watch my body and my facial expressions and making sure I did nothing weird and that only happened when I was around certain kids who judged me because they accused me of being weird and showing off. Before then I didn't really care what anyone thought so I didn't change my behaviors. Yes I do think I have anxiety but I don't understand why I also have an anxiety disorder because why not diagnose other autistic people with it? After all doesn't their autism also cause them anxiety? Why not diagnose them with both too you know? I know people with autism also have a need for control. I also think autism can cause social anxiety due to many rejections and social failures like me. I don't say I have an SAD, I do think I have some social anxiety. I have looked at the condition and I do not fear being judged or think people are watching me, etc. so social anxiety alone doesn't fit. I did have it around my dad's cousin only because she has said to me I am selfish and I kept annoying her so I learned to not speak whenever she is around because I was trying to make her proud and not be selfish and I didn't want to make social mistakes. Then I stopped caring what she thought so the anxiety went away. But I still didn't talk around her. I only spoke when spoken to. I didn't worry about goofing up.

The anxiety is what got me diagnosed with AS BTW. That is how people have gotten diagnose with an ASD was due to anxiety issues they were having. I think I do have some OCD but I don't think it fits alone, same as for anxiety.

People sometimes know themselves better than others (probably better than their own parents) so when they get diagnosed with co morbids, they know that condition alone doesn't quite fit because it doesn't explain everything. Yes they are depressed but they know they are depressed because of the stress in life. Yes they have anxiety because of the stress in life and all these demands and trying to make it in the real world like a real person, yes they have OCD because they worry and can't stop thinking about what has upset them and they have a hard time getting over it. Yes they have routines but only because it relaxes them and calms them and they like their routines. They don't feel compelled or feel any anxiety doing it and they don't have the common OCD features like hand washing or checking things or needing to organize things. Even if they do like patterns and things organized, anxiety has nothing to do with it because they like it that way and yes they do these routines they have to do but they like it and there is no anxiety about it, there is only anxiety if they can't do it.

I have ran into some other aspies who also have anxiety and I can tell who has it just by how they react. Max Beaverman is an example of it. Though he is a fictional character. Most people might think he is a brat or just disrespectful who needs discipline. Ironically some aspies have felt that way about him and views his meltdowns as tantrums.

I so agree with everything you said.

This is an interesting topic which makes me wonder about my own circumstances. I have both ADHD and ASD.

I went to a specialist doctor to discuss ADHD symptoms. As well as diagnosing me with ADHD, he also thought I had ASD. So he referred me to his colleagues were I was subsequently diagnosed with ASD. It had never occurred to me that I could be on the spectrum. And I've never heard of 'comorbidity' before.

Since then I've wondered if the ADHD was a misdiagnosis. Recently, I saw the ADHD specialist doctor again to review how things are going. He's keeping me on the ADHD medication. And I'm also being referred for some ASD therapy sessions.

Interesting.

And the reality fairly common in women, especially women who have had an atypical or dysfunctional childhood. I was misdiagnosed with Borderline Personality Disorder (redefined as Emotionally Unstable Personality Disorder in 2010 though not sure if that just me or a general redefinition of the disorder) only, on the back of my ADHD and (poss ASD) son's Social Worker's year long insistence that I be reassessed, to be diagnosed with ASD and ADHD myself about a year ago.

It is apparently becoming increasingly common for it to be recognised that ASD or ADHD has be a missed diagnosis in people with Borderline Personality Disorder, esp women and esp. if there has been trauma.

More pertinent comment here in this 2011 thread:

viewtopic.php?p=4258214