Needs

Atypical people often have very original, specific and compelling needs. Some insist on having them fulfilled down to the last detail at all times, while many have a tendency to suppress most of their needs and just suffer in silence (until they eventually become enraged, depressed, suicidal or ill).

Here are examples of some of the most common needs in Aspies:

Tolerance

To be accepted or at least tolerated as one is and not judged or ridiculed for being different from the majority. One does not choose to be born with unusual needs & interests, atypical learning style or sleep pattern, a hypersensitive nervous system or too much or too little energy. Calling a child ‘picky,’ ‘fussy,’ ‘stupid’, ‘clumsy,’ ‘lazy’ etc. does not help it in any way. Usually it has very good reasons for all its reactions, behaviours and wishes, and should have these respected as much as possible, within reasonable limits.

Harmonious environment

To have a safe environment free from stress, noise, allergens, distractions, interruptions etc. in which to live, relax, create, study, work or play can make the difference between functioning and not functioning.

“If you watch autistic people closely, when put in an environment that they either fashion for themselves or an environment which is created for them based upon their needs, they tend to function better and more comfortably than they do within an environment not suited to them. In ideally created environments, autistic individuals’ own personalities tend to emerge and manifest themselves.”

Tom, Aspie from USA

Help, care and support

Many neurologically atypical, impaired, creative, sensitive and slow-maturing individuals are more or less unable to make it on their own in the world and may need help, support and assistance in various ways. Though usually not in the form of micromanagement, but more of an outer framework within which to function independently.

“I’ve often said to people if someone would just take care of me and provide me with all my needs, I would practice law for free and not have to worry about the business side of it.”

Anne Marie, ADHD/Aspie attorney from USA

Some have unique skills and highly original ideas and that could be of benefit and joy to others if only recognized, but many of these gifted individuals are too passive, introvert, non-ambitious, nervous, easily stressed and confused about how things work, to make something out of their ideas without assistance and special consideration.

Of course, not every Aspie needs this. Some are perfectly independent, others need only a little help.

Time and space alone

What may be hard for people who are more social to understand is how incredibly vulnerable a creative/specialist/supersensitive person can be while in a hyper-focused state. Because of this, many have a very deep need for is their own space that no one else has access to, unless invited, and to have enough time to themselves to relax or pursue their special interests.

Having a family can be very difficult to combine with such needs, but if the family understands and respects this, it will most likely be more pleasant for everyone involved.  Having some type of arrangement where one is guaranteed that one will be left alone when inspiration strikes, or during certain pre-agreed-upon hours, may be crucial for the continued sanity & equilibrium of such a person.

To avoid interrupting a sensitive person at the wrong moment, I suggest some sort of sign on the door, perhaps colour-coded, just like the lamps they used to have by the door to the doctor’s office.

Green = “Approachable – welcome in.”

Amber = “Maybe, if it’s something important” or “Finished soon, please wait.”

Red = “Busy – do not disturb under any circumstances (unless it’s a matter of life & death).”

(Some autistics use colour coded bracelets at large meetings to indicate similar meaning.)

Sensitive & introverted people may also need extra time to regenerate alone after having been social, physically active, emotionally upset or over-excited, and after having experienced something unusually pleasant or unpleasant. Whether it is a heartbreak, a wonderful concert, or just a trip to the local mall, the sensitive person may need anything from a few hours to several days or weeks to integrate the experience and ‘get back to normal.’ Please respect this need as much as possible and don’t disturb unless absolutely necessary.

Things for parents to consider:

“1) When children demonstrate a degree of trustworthy independence, knock before entering their rooms, even if the door is open.

“2) Clean their rooms, but don’t go throwing out or giving away belongings or personal possessions without asking first. The reason for this is that many Aspie and HFA children develop bonds with their possessions for reasons which YOU many not understand. Throwing something out or giving something away while they are away from their rooms:

“A) Will erode the trust you have established with them. Instead of focusing on work, they will go to school in the morning and spend the day wondering what it is you are throwing out or giving.

“B) Make them feel insecure. It may be your house, but they never asked to be born or to live in it. You DID say that their room is their room, and they will take that literally.

“C) Their haven isn’t a haven if they have to spend more time defending it than retreating inside of it.

“If you want to get rid of clothes they have grown out of, don’t assume they know why you are doing it.  Ask to get rid of them, and if they refuse, talk to them logically and explain that they won’t fit anymore. Have them try them on if they still refuse. If THAT doesn’t work, then let them keep their clothes until they decide to get rid of them on their own. They may form a bond with their toys as well. Be sure to ask before giving a toy away.  Don’t assume because they broke a toy that they don’t want it anymore.

“What AS/HFA kids need is stability. And given that they will be growing and maturing over a period of 18 YEARS, and having new classes in school each year and making and losing friends, it will be much MUCH harder for them to handle life than it would be for non AS/HFA folk. They don’t need other random elements such as things mysteriously disappearing from their rooms to worry about.”

Tom, Aspie from USA

Familiarity and predictability

For someone whose nervous system is so extremely delicately wired that they tend to become highly stressed, panic or have a brain malfunction in unfamiliar or demanding situations, it is a natural and healthy survival instinct to try and minimise stress factors by insisting on safety, familiarity and predictability.

“I didn’t at all like change when I was a child but preferred to be at home with mom where everything was ’as always’”

missbutterfly’, Aspie from Sweden

The reason I prefer to only go to familiar places, is that I’m a very visual/spatial person who needs to have a picture in my mind of that place well advance so as to be able to prepare myself mentally, especially if I’m going there alone.

The first time I have to visit a new place, it helps if I have seen a map or picture of it beforehand, and if I have a trusted companion with me. Once I have made a mental recording of the general layout, colour scheme, lighting type, where the entrance is etc., I’m fine. The clearer the picture I have of a place, the more relaxed I’ll be.

If it is a shopping mall for example, I usually feel overwhelmed, disoriented and confused the first time and then progressively more relaxed with every visit. My shopping will be faster and more efficient as I learn where to find everything (including best parking spot, entrances, bathrooms, places to eat etc.). When I find that they have closed shops or moved departments, redecorated or changed the lighting so that a place no longer matches my mental image, I get somewhat disgruntled.

Ing, site-author

“I find it even worse if they have changed the packaging of a brand I buy, I just cannot find it and am stood in the supermarket in total confusion. I like to go in and go get what I want and I want it to be in the same place with the usual packaging that I have come to recognise; it really throws a spanner in the works if they have changed packaging or moved the product I am looking for. I also dislike ‘new and improved’ it rarely is and I prefered the ‘old and inferior’ 🙂 ”

Julie, Aspie from England

The more familiarity & predictability one has in one’s life, the more a sensitive person will relax and start functioning above basic survival level.

Routines and sameness

Many, though far from all, Aspies need routines to be able to function. Strong reactions to changes in plans, environment, people or daily routines only demonstrates how vitally important consistency and sameness is to that person.

“I have a getting up in the morning routine, a going to bed routine, and a few routines that are specific to other types of necessary chores/activities.  Routines help me to cope.  If I have these standbys each days, I find it better helps me to be more receptive and to cope with the more chaotic aspects of my life.”

Tom, Aspie from USA

However, after making polls and discussing the issue of routines with other Aspies online, it turned out that although many liked routines, they only liked the ones they had created themselves! Following schedules created by someone else was surprisingly unpopular. Especially ones that dictated doing specific things at certain times (micromanagement).

“I am perceived as an odd paradox of inflexibility. I am in myself spontaneous and flexible (which is ME, not necessarily every Aspie) but I’m inflexible towards outer change I haven’t come up with myself.”

Emma, Aspie from Sweden

I have figured out what daily routine works best too keep my body and mind in balance. It’s especially important that my day starts with this optimal routine. If this somehow gets disrupted by circumstances (e.g. travelling or having guests) my body is not happy with the unexpected change.

However, my routines need not occur at any specific time, only in the same optimal order every day. I don’t like to be rushed, I like to just let things take the time they take and go with the flow.

But I always like it if others are predictable and do things at the same time every day (in case I wish to call them, for example). If I need help with something, I prefer it to be the same person every time, so as to not have to endure any surprises. I cannot easily adjust to a new personality every time, and not knowing in advance who will come can be a major source of needless stress.

Ing, site-author

Many autistics also form a very strong sensory or emotional attachments to favourite objects, e.g. a favourite cup, pen or towel, and are often so tuned into sitting in the exact same place every time that it causes major internal disruption if someone else has taken that seat. To a socially oriented person, the most valuable thing may be how s/he is perceived by others so if making a fuss will make that person look bad, they will gladly sit in an uncomfortable seat to avoid it, or just grab any seat and not even think about it. But to the sensory oriented person, the intense discomfort experienced from having to sit in the ‘wrong’ place can really ruin one’s day and no amount of social approval can make up for it.

Exemption

Sensitivity and AS should be legitimate reasons to be excused from team sports and from being drafted, without necessarily having to be accompanied by a mental disorder label. A sensitive person will probably be a lot less inclined to fight or compete anyway and is therefore pretty useless in competitive games and war, and also more likely to be more or less severely traumatised by it. Having people in positions they are not ‘designed’ for is painful, costly and inefficient for everyone involved. Not every Aspie is a highly sensitive pacifist, but many seem to be.

“Personally I have always been a pacifist, that is to say non-aggressive. I was the first person that my draft board, having been in existence since 1941, or so I believe, in 1964 granted the status of ‘Conscientious Objector’ to warfare. I served my country as an occupational therapist aide for two years in a private hospital. I can’t even imagine being aggressive!”

‘Rainbow’, Aspie from USA

Extra time

Some Aspies, and especially those with AS/ADHD, are extra quick in the body or head, but some of us instead need to do things at our own pace and simply malfunction under time pressure and deadlines.

For some peculiar reason, speed is usually valued very highly in our Western culture, even though it often induces needless stress and increases risk of mistakes. Timed tests are always biased against those just need a little more time to get it right, and against those who are sensitive enough that their ability to recall and concentrate is severely reduced by stress. Unless the test is for a profession where speedy reactions and resistance to stress really is of essence, e.g. as an air force pilot or paramedic, I see no reason to discriminate against those who are a little slower or more sensitive. Anyone who asks for it should be allowed extra time to do tests. (I believe this is already possible in some countries if you have an AS or ADHD diagnosis.)

And this goes for any activity. Many of us need to finish what we start, at our own pace, and function best when we can go with our inner flow, rather than being ruled by the clock.

“If you arrange an activity ’the Aspie way’, you don’t finish I until those who are involved have tired of it, regardless of if that takes 5 minutes or two days.” 😉

Leif, male with Aspie traits from Sweden

Control

Unlike some, Aspies and autistics usually don’t take any pleasure in controlling others and have no wish to control just for the sake of controlling. The only thing we’d like control over is the amount of pain, stress, disharmony, boredom and sensory overload we are subjected to.

“I don’t have energy or inclination to be a control freak, although I like to control my environment, not people.”

Julie, Aspie from England

A right to veto against things that will be too stressful, painful and overwhelming would probably be welcomed by many. Though naturally, there has to be reasonable limits and a negotiation process between the various members of a family or group.

Negotiation

What all parties involved in any situation need to learn is to express their needs, to negotiate and compromise and to show respect for other people’s needs (once these have been clearly expressed).

One way may be to ask each family/group member to list the things that they deem most important to their well-being, to rate each thing on a scale from 0 – 10, and then compare notes and negotiate so that as many top priority things get as accommodated as possible. Take into account things that others cannot help; that are part of their innate temperament or neurological design, or too deeply ingrained by upbringing & culture to easily change.

Thus, a person who has hypersensitive hearing and gets queasy from hearing/watching others eat can’t really do much to change that. S/he does not seek to control others for the fun of controlling, only to avoid ear pain or nausea. But others can’t really help making noises or wanting to talk when they eat, so the simple solution may then be to get earplugs or simply not eat together. If this clashes with another family/group member’s emotional/culturally instilled need to have everyone together at meals, that can be sorted out by negotiating and comparing how important each person’s need is in this particular situation.

When deciding when to do something potentially arduous for someone else, I often use a dual scale that goes from -10 to +10. If the action appears to mean +9 to the other person and the strain of doing it only puts me on -3 or so, I consider it worth my trouble. But if it’s a small thing to someone else but will set my health- or energy account back more than I can afford, I may decline. If it’s 50-50 I go with what feels best in that particular situation.

Quality of Life

“For me [Quality of Life] would be:

1. Education, the ability to partake just as anyone else in education with the understanding that overwhelming happens. This is a very overwhelming item.

2. Employment, or at least part-time where the employer is understanding of A.S.D’s and that I could do a good job just need to do the same things without much interaction. This is a very overwhelming item.

3. Socializing, even though I do not find much initial interest in it, usually once someone persistently engages me socially, I get use to them, so I think finding disability groups to meet other people. This is a difficulty.

4. When I am older, I will not be able to get to the grocery store, the doctors or go to other places without help. So I am worried now about that.”

Nathan, Aspie from USA

“For me quality of life would include the following:

* Freedom to be myself (no one forcing/pressuring me to conform or be normal).

* Freedom from bullying and harassment.

* People who accept me for who I am.

* The ablity to compensate for my problems.

* Sufficent time and money to enjoy my ‘special interests’.

* Having my sensitivities respected.

* Being able to do things my own way.

* Being able to get ask for help and receive it without being put down for not being able to do things or having difficulty doing things.

* Having people accept it when I say that I can’t do something or have difficulty with doing somethings (instead of falsely being called lazy, uncooperative, etc.)”

Ilah, probable Aspie HSP from USA

In my own experience I have found that once one’s most important basic needs are met, that reduces stress to such a degree that one is then able to relax and become more flexible about things that may be top priority to others. Before reaching that stage, it is often impossible to compromise or give in to the wishes of others without violating oneself and getting neurologically disrupted, physically ill or emotionally upset and depressed.

LINKS

Kids with Autism Need Holiday Preparation how to make life easier for a young Aspling

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