Originally posted here under the pseudonym Elsa Matawan. https://autisticandawesomeblog.wordpress.com/2017/03/17/how-to-report-missing-adults-with-autism-or-learning-disabilities-respectfully-by-elsa-matawan-guest-blog-post-ausomely-autistic/
It’s everyone’s worst nightmare; a loved one goes missing, and we fear for their safety. The stakes are even higher when the person has autism, or a developmental difference. When dealing with people with special needs, these unique sets of challenges open up an ethical debate over how to report the person. How much, if at all, do you reveal the challenges while maintaining the privacy rights of the person? Here are some tips on how to balance safety with respect.
Photos. Use as mature a photo as possible. Crop only the person’s face in the photo. Items in the photo are distracting, and should be cropped out. Government issued ID is preferred.
If a person has a facial difference, limb difference, or any other physical difference, refer to the identifying feature as a difference. Never call the feature a deformity.
If the person uses a wheelchair or any other adaptive device, refer to the person as “using” the device, rather than “confined” or “restricted” to.
Disclosing disability. How to disclose special needs is a constant debate. How a person’s needs are disclosed is a personal matter, potentially affecting employment, and other aspects of personal life. In many cases, autism can be left out of a description.
How autism is perceived by others can significantly affect the mental health of an autistic person, according to a 2017 study of autistic Scottish adults. Thus, one must be very sensitive, especially considering a missing person’s already vulnerable state, when deciding if and how to describe autism in a public report.
In some cases it can be deemed beneficial to disclose autism. Identity first language, “person is autistic” is preferred by most of the autistic community. Some prefer person first language, “person has autism”. The best way to disclose is under the physical description of the person, as autism is always a natural born part of the person.
Either way, the emphasis should be on the missing person as a whole, not the special needs. Therefore “missing person” not “missing autistic person” should be the headline. Some individuals may prefer gender neutral language as well.
Functioning levels. Phrases like “high functioning”, “low functioning”, and functioning age comparisons (comparing an adult to a child or teenager) is problematic. Adults with disabilities who may need some support do not identify this way. Many developmentally and/or cognitively different people find age comparisons offensive since it implies that because some adults do not lead a life similar to their neurotypical peers that they must be like children or young teenagers. No one would compare a physically challenged adult requiring assistance with a child or teenager.
Functioning levels can fluctuate depending on stress levels,the task at hand, and physical or mental health. No one functions at their best when stressed. A more positive way to describe the person could be “may not respond/speak at their best under stress.”
Some people have significant learning disabilities, dementia, or other conditions, and may appear to act younger, or require a lot of personal care. However, these individuals likely have mature thoughts, feelings, and desires. One way to describe highly challenged people could be “requires personal care support”.
Verbal, low-verbal,or non-verbal descriptors are needed. (Some prefer the term non-speaking). Keep in mind some autistic individuals may prefer to write down information as their form of communication when under stress.
“Scared of uniform presence” sounds rather young. This kind of information, while important, needs to be written in a clear, respectful way that describes possible behaviour. Information about how a person responds to police is best shared with officers privately.
Sensory issues are common for people with autism or other neurological disabilities. One can write about these challenges in a mature way. An example: “Hates bright lights” could be more accurately be described as “is light sensitive”, “wears sunglasses”, “Please turn off flashing lights. This person has light sensitivity”.
It might be helpful to add a disclaimer on a missing persons news release stating “This report describes a person under unusual circumstances. It may not describe or reflect the person’s usual state.”
Suggest that people who are prone to going missing write their own sample missing persons news release and give it to a trusted family member or caregiver. Set up an online missing person news reporting form for the family to fill out. Options could include a box to tick off if one doesn’t want disability disclosed in the news release. This would be separate from registries such as vulnerable persons registries.*
In the found persons news release, thank the public for helping locate the missing person. Ask the public to remove posts and tweets of people who are found alive.
Consider posting only the name, photo description, photo, and year of birth on social media. Add a link for more details.
The hashtag #MissingPerson (city acronym) would make obsolete missing social media posts easier to locate for deletion. Delete the link and post in cases where the person is found alive.
One could also add the hashtag #SensitiveInfo on all tweets and posts. The sensitive info settings can also be used.
The Police’s role in helping an individual move on with their life once they’ve been safely found is important and appreciated. It shows understanding and compassion.
*A word on vulnerable persons registries. Vulnerable Persons Registries are not missing persons registries, nor are they fill out forms to report a missing person. They are online forms that are filled out by an individual and/or caregiver to register the profiles of persons at higher risk of going missing. These registries are controversial. Some people find them liberating, while others feel they are a form of police profiling. There is a very dark history involving the police and neurodivergent people. The mandatory “fill out by a caregiver” portion of some registries is especially controversial. Another problem is that the registries are run by a third party corporation, and, may cause discrimination, and potential police profiling.
If a municipality has a vulnerable persons registry, they must be voluntary, have a sample registry form to read before choosing if one wants to fill it out, and it must have a default fill out yourself mode for teens and adults. A vulnerable persons registry must allow anyone, (neurodivergent, neurotypical, disabled, non disabled, etc), to sign themself up for the registry without having someone else fill it out for them. Nor should they have to give a reason as to why they are signing up for the registry. The registry entry also must be temporary, renewable after each year, and have an opt out option at any time.
The better alternative to a vulnerable is to have a blank printable form that one can fill out on pencil and paper without having to police register it. This form would only be handed in if the person is actually missing.
#FunctioningLabels #FunctioningLabelsMean #FunctioningAgeLabels #FunctioningAgeLabelsMean #EndFunctioningLabels #EndFunctioningAgeLabels
On May 10th, 2019, an official inquiry into how missing person cases involving minority communities is being launched in Toronto. Anyone in the world can give feedback. This issue in particular can affect neurodivergent and autistic persons. Here is a link to the official inquiry. https://www.missingpersonsreview.ca/process-overview
To report any abuse or mishandling from police anywhere in Ontario, one can also launch a complaint through this resource. https://www.oiprd.on.ca
On December 9th, 2019, the Toronto Police Service launched a vulnerable persons registry. This was not without controversy from the autistic community. https://www.torontopolice.on.ca/vulnerable-persons-registry/
Here is an article I wrote about the Toronto Police Services registry.
There are viable alternatives to vulnerable persons registries. Child Find Saskatchewan has paper booklets that can be mail ordered for free. The “youth” one is also suitable for adults. They also have a crisis line that anyone of any age can call if they are at risk.
And, in the UK, there are online forms that can be filled out if a person is actually missing.
Here are links to additional services and resources. The links are from various sources, and may or may not reflect my views.
Here is an article, written by autistic persons, on ways one can help autistic persons with mental health challenges through a crisis. It also offers crisis prevention strategies. https://amase.org.uk/resources/mhguide/
Here is an article on what an autistic meltdown may look like, and how it is different from a tantrum. https://the-art-of-autism.com/an-autistic-meltdown-is-not-a-tantrum/
Tracking devices, often used in the USA under Kevin and Avante’s Law, are considered discriminatory by many autism advocates, including the Autism Self Advocasy Network. They should always be non invasive and easy to remove, and should never be used as a form of predictive policing.
Here is an article by ASAN founder Ari Ne’eman on the many reasons autistic persons may go missing, as well as the possible ethical problems on some tracking devices and tracking based programs and legislation. https://www.vox.com/the-big-idea/2016/12/17/13993398/safety-autonomy-avonte-tracking-autism-wandering-schumer
In 2011, ASAN, along with several other organizations, opposed the Centre for Disease Control’s proposal to add “wandering” as a seperate, independent disability classification. https://autisticadvocacy.org/2011/03/faq-on-proposed-icd-9-cm-wandering-code/
Wallet cards should never be mandatory. Police carding programs are discriminatory and unethical. Wallet cards should never be part of a police carding program. If one chooses to use them, they should be voluntarily filled out and handed out by the individual. Bear in mind pulling out anything out of a bag or pocket can be a safety concern when used around law enforcement (an officer may mistake the gesture of reaching in as a threat). Here is Autistics For Autistics Ontario’s statement on wallet cards. https://a4aontario.com/2019/10/15/our-report-to-the-government-of-canada-outlining-the-problems-in-current-policy/
If one chooses to voluntarily obtain a wallet card, here are some links.
The following link to a printable wallet card also gives some really good suggestions, such as voluntarily choosing to get to know and dialogue with local officers.
Here are tips on ways one can support an autistic person in mental health crisis, along with a link to Australian crisis lines. https://jeanettepurkis.wordpress.com/2017/09/15/are-you-ok-safety-strategies-for-autistics/
Here are American crisis lines: http://suicidehotlines.com/national.html
Here are two American resources on autism and police interactions (including missing persons).
Here is a resource to create your own crisis line. https://www.befrienders.org/?fbclid=IwAR2BPyBdrCa9tFcxh_2t2fQgBfmbOjhlcq19O1DnGRB9fmBNiXbn8iBE654
Here is one resource from the UK. While I do not agree with the name (autism never goes missing), the website has a lot of good material. https://missingautism.org.uk/home
For further information on reporting about neurodivergent people, here is the Mindset Media Guide. https://sites.google.com/a/journalismforum.ca/mindset-mediaguide-ca/
If you or a loved one is thinking of going missing, here is a link to nationwide Canadian crisis services. https://www.crisisservicescanada.ca/en/
Here is a list of Toronto services. https://toronto.cmha.ca/mental-health/find-help/
Despite the name Childfind, any one of any age can call these crisis lines. https://www.childfind.ca/provoffice.php
Here is a link for UK readers of all ages. https://www.missingpeople.org.uk/how-we-can-help/missing-adults/24-hour-help.html
Here is an Australian resource. https://www.missingpersons.justice.nsw.gov.au