neurodiversitysci:

snakedance:

lysikan:

candidlyautistic:

autisticmari:

There are a lot of diagnosis posts with undiagnosed people questioning if they’re autistic or self diagnosing themselves. Autism is very complicated and there are many factors that affect accessibility of a diagnosis for different individuals. Because it is so nuanced (something my black and white brain has trouble with), I’m not going to comment on the practice of self diagnosis, because it’s complicated.

However, I’ve noticed something, although I cannot comment accurately on the prevalence: perfectly functioning individuals diagnosing themselves or questioning if they have autism. Please note, I’m not calling anyone out or making accusations. This is just a theme I’ve seen in general. I’m not a professional and obviously cannot diagnose or un-diagnose anyone through the internet, nor is that my intention. ASD is complicated and hard to diagnose in certain populations.

What I want to point out here though is that in order to qualify for a diagnosis, there must be significant impairment present. You could tick off every autism symptom, but if it didn’t affect you in a significantly negative way, you wouldn’t really have autism under the DSM. You could identify with the Broader Autism Phenotype, but not have clinically significant symptoms.

There are three levels of ASD: requiring support, requiring substantial support, and requiring significantly substantial support. This means that in order to function at all in daily living, someone diagnosed with level 1 ASD (the least severe) would require support in the form of therapy, accommodations, government benefits, etc. Even with supports in place, an individual with level 1 ASD might not be able to hold down a job, have a steady relationship, raise children, etc. Here is the DSM 5 definition of ASD: http://images.pearsonclinical.com/images/assets/basc3/basc3resources/DSM5_DiagnosticCriteria_AutismSpectrumDisorder.pdf

Someone with the mildest case of ASD (level 1) requires supports, defined by:

“Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.”

If without supports in place, you are able to function socially, professionally, in relationships, and otherwise, you likely do not meet the clinical definition. To me, an ASD diagnosis is a tool to get services and to help professionals to better, more quickly understand my deficits. I know some see autism as a part of their identity or an explanation for why they are the way they are. I don’t feel this personally, but I respect that. However, autism isn’t just some sort of accessory. A psychological diagnosis is first and foremost a medical tool. If you seek diagnosis but do not need/want support services after it, I question the need of the diagnosis.

I think some sort of distinction needs to be made between clinical ASD and the Broader Autism Phenotype. Without intervention, autistic people not only have trouble socially, but literally cannot learn the skills naturally. Introverts without autism might find social settings tiring or difficult, but they are able to learn the skills naturally through trial and error, and practice. An autistic person would not be able to learn no matter how much error if left to his/her own devices. Only through intervention and being explicitly taught how to make eye contact/modulate tone of voice/respond appropriately/whatever deficit an individual has, can they function any display the behavior of someone without autism.

My intention is genuinely not to gatekeep or make people feel unwelcome. I just hope to educate about the severity of ASD and how it is more than a quirk, but a disability affecting the functioning of lives. I do not mean to question the diagnosis or validity of anyone here. I am just a person on the internet and cannot diagnose anyone. I hope people coming here for answers do find them and can use those answers for betterment. I am a female who was diagnosed in high school. I understand extremely well how hard it is to go undiagnosed. However, I stress the importance of an accurate professional diagnosis, because the therapy I’ve gotten has been extremely helpful. Definitions are constantly evolving. What I’ve written here might not be accurate in ten years. However, under current definitions, ASD is defined by clinically significant impairment. Professionals are not infallible and there is a lot we still do not know. But professional diagnosis is still far more accurate and effective than any alternative. I acknowledge many cannot get diagnosed for various reasons and sympathize with them. There are currently no good solutions unfortunately.

TL;DR: A clinical diagnosis of Autism Spectrum Disorder requires an individual to need support in order to function in life. If someone is able to function normally without support, they may not qualify for ASD. Autism is complicated and a third party is needed to evaluate the severity of one’s symptoms because as individuals, we do not have the proper insight into what is normal or clinically impairing. This is just food for thought, not meant to insult or offend or invalidate anyone.

I think this is very important as a topic, and I’m glad you brought it because it is important. I think, however, there is a very important nuance that you are forgetting.

What follows is my opinion on your post, which I hope you will interpret as an invitation to discuss nuance, rather than as an adversarial argument. I really do like what you have to say, I just think there is more to it!

Right. So my response!

Especially among older adults who have gone without diagnosis for a very long time, we have learned to cope and as such our impairments seem negligible. It is worth noting, though, that this still qualifies for diagnosis under DSM-V (emphasis added).

C.) Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

This further clarified outside of the diagnostic criteria in the section Diagnostic Features:

Many adults with autism spectrum disorder without intellectual or language disabilities learn to suppress repetitive behavior in public. Special interests may be a source of pleasure and motivation and provide avenues for education and employment later in life. Diagnostic criteria may be met when restricted, repetitive patterns of behavior, interests, or activities were clearly present during childhood or at some time in the past, even if symptoms are no longer present.

I think also it is worth talking about what constitutes “clinically significant impairment” especially in light of item C in the diagnosis. Specifically, if you actively have to cope with basic social skills as defined by item A, then you are by definition exhibiting clinically significant impairment.

Put another way, if you script perfectly in every situation and therefore do not appear disabled to society, you are still actively scripting, you are still going above and beyond what is typical of social interaction, and that in and of itself would be clinically significant impairment.

Following the actual criteria are recording instructions for Specifies, which in this case include the support levels you mentioned. This section explicitly acknowledges that support levels are contextual (emphasis mine).

The severity specifiers may be used to describe succinctly the current symptomatology (which might fall below level 1), with the recognition that severity may vary by context and fluctuate over time. Severity of social communication difficulties and restricted, repetitive behaviors should be separately rated. The descriptive severity categories should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets.

I get your concern, but I think the nuance in diagnosis allows for a little more give than your post implies.

Thank you for adding the nuance.

Catch-22: Need the supports to get diagnosis but needing the diagnosis to get the supports.

I’m with @candidlyautistic on this one. A disability doesn’t necessarily mean one can never do something. It means that doing the thing will always be harder, painful, and more unnatural than for everyone else. Many dyslexic people learn to read, with good comprehension, but they will never read quickly or easily no matter how many years they spend reading. Someone with ADHD can learn to use planners, to do lists and other organizational tools but will flounder more than others without them. And if stressful life events happen that deplete them so they can no longer make constant effort, they will start losing things, forgetting appointments, running late, interrupting people, etc.

Is autism a disability? Absolutely. Does original poster understand what a disability actually is? No way.

Look, if doing a “basic” task like having a five minute conversation or being able to do all your required tasks of the day takes everything you have, such that you have no energy left to learn other skills much less enjoy your life, that is a disability. If your ability to do these tasks is so precarious that the least life stress makes them impossible for you, that is a disability. If you have arranged your life to get all the supports you need informally from your family, friends, and bosses, so it looks like you don’t even need accommodations and you yourself start to forget you need them? Yep, disability.

For more in depth explanations of what disability actually is, see:
1) http://neurodiversitysci.tumblr.com/post/160234227886/being-disabled-means-more-than-just-being

2) http://mosaicofminds.blogspot.com/2016/09/adhd-tipping-points-why-people-with.html?m=1