Thursday, October 13, 2011

Psychiatrists propose a new diagnosis for early psychosis

I came across This article in the Scientific American that talks about adding a new diagnosis to the DSM V that would pre-diagnose what looks to be early onset psychosis. While I see some potential in this, I think it is too vague in it's nature of what would constitute 'symptoms' and would lead to even more misdiagnosis, especially of mild forms of ASD where we have finally moved away from clinicians misdiagnosing people with AS with psychotic disorders, such as schizophrenia.  I think that medicating something that we don't understand is never a good solution. Anti psychotics always make people calmer and quiter no matter what was the original problem.  It doesn't mean that it solved anything.  I am however all in favor of cognitive behavior therapy, particularly the kinds that involve Mindfulness skills for people that seem to be exhibiting paranoid, or delusional symptoms.  I think everyone could benefit from learning how to be more mindful and more in tune with themselves. I just see too much potential pitfalls in slapping labels on people that may be difficult to remove due to the nature of the label itself, ie; the patient may not get taken seriously after being diagnosed with something so stigmatizing. Being labeled as psychotic, or even potentially so, needs to be done with as much careful precision as possible. I know just how it feels to sit in a therapists office trying to explain my own social awkwardness and sensory issues in the best way I knew how with the limited amount of emotional awareness that I had, and being accused of being paranoid, and being told that it was just my perception of how I perceived others that was the issue.  I feel this diagnosis could lead to more of that prejudice and would outweigh the potential benefits.

Monday, October 10, 2011

Different Perspectives: Dining Out-Part 2

In my Previous post I talked about some of the sensory difficulties and such that can be associated with going out to dinner when one is on the spectrum.  I promised a follow up with some ideas, and suggestions to some of these common problems.

First, let me take you back, just a little bit to how I came about these different ways of doing things.  My older child, Bubby is almost 10 years old.  He is on the milder end of the spectrum, some doctors say PDD-NOS and other Asperger's, and still others High functioning autism.  I tend to to go with HFA, or mild autism, as I don't care much for functioning labels on humans.  Anyway, he wasn't diagnosed until he was almost 5 and wouldn't have been then if it weren't for his brother being evaluated due to his unmistakable autism features, namely nonverbal.  So, I trudged with him in tow to every place, including restaurants treating him as if he were a typical child until autism came into my awareness when he was 4.  He wasn't a typical child and the disparity between my expectations and his behavior became increasingly clear via meltdowns.  He threw a whopper of a meltdown every place we went the first 4 yrs of his life, without fail.  I came home and cried after every time I attempted to leave the house with him during that time.  It was awful.  After discovering he was on the spectrum (and subsequently myself) I was able to arm myself with this knowledge.  I was able to accommodate what he needs to help him feel comfortable in his environment, and this made all the difference.  These little nuggets of info would have made a world of difference in my family's lives 8 years ago, so I am hoping they might help some other parents to be able to go out to eat and have a little time to relax without it being such a drag out struggle.

1. Decide where you want to eat.
I know that seems pretty simple and something you do anyway, but... let's take it back a few steps and think a little more about it.
Firstly, does it have your child's favorite food, or food they like to eat?  Many kids on the spectrum will only eat a small variety of things.  With my boys, they almost always will insist on chicken strips and fries, or pizza.  Where we go must have these things, otherwise there will likely be a meltdown, or at the least some bored kids and wasted food.  You can call someone you know who has been there and ask, or call the restaurant and ask.  Depending upon where you're going, I have been surprised to find menus on line for many restaurants.

If there is a good chance of no food on the menu that your child will eat, and you need to meet at a specific place, say for a social gathering, then you can bring food in with you.  This one is gutsy, and takes courage, but I've done it before when a group of people we were meeting at a European cafe  where there were no chicken and fries, or pizza.  I had my going out to the zoo/beach bag with us, so we stopped at McDonald's and got the boys some food and brought it with us, purchasing their drinks at the other restaurant., and taking our trash with us.  As long as you're patronizing the restaurant you're eating at as much as possible, and it's for special needs only, then I don't see why this isn't okay.

How are your child's waiting skills?  Keep in mind your child's emotional, and cognitive level when selecting a place to dine.  If they can't stay seated for than a few minutes, or has had some major issues in the past with dining out, then perhaps you may be better off doing fast food.  Fast food venues offer quick escapes and quicker overall eating time than other restaurants.  Save the nicer places for grown up times, like dates with your spouse for the time being.  We rarely took our kids anywhere else for a few years, because Bubby was just unable to handle the slower, more formal atmosphere.  Fast food places are excellent places to practice manners and good behavior. 

2. How crowded is the establishment likely to be? 
Any place around where we live that's  any good to eat at, and that's not fast food, is packed during meal times. This is not only an issue for my boys, but also for me.  I can't handle the noise and the crowds.  It really takes away from my whole experience of going out, which I do enjoy doing.  If you know ahead of time that the restaurant might be super busy, then it might be a good idea to go on an off time.  Sometimes, we will go at 5:00 or 5:30.  Other times, we will have a snack and go closer to 7:00 or 8:00. (the later time sometimes is still just as crowded,so beware of that) If it's busy and we need to go at a peak time, due to not planning ahead, or unforeseen circumstances we will split up and my husband will wait inside and me and the boys will wait in the car or walk around until our table is ready.  My husband will text me and the dreadful wait in the shoulder to shoulder crowded corridor is avoided.  Also, I sometimes see if there is a 'call ahead list'.  It's pretty much the same as reservations, but not as strict of format.  That way you can shorten your wait for a table that way.

3. Picking out your table.
I doubt that NTs really ever think about their table placement, much, but I know I sure do!  First, if at all possible, always pick a booth.  I hate sitting at tables.  Booths are much more private, quiet, and block out so much more stimuli. Tables make me anxious and nervous.  Plus, I can kind of pen in my boys in booths.

Next, locate where the most noise is coming from.  The cash register, the door , the kitchen, ect.. Find the table as far away from these areas as possible.  The least amount of traffic and noise, the better.  If you have child who is frightened of motor noises it is imperative you not sit by the kitchen where blenders, and other machinery will likely set off a meltdown. Beans is that way, and it really hurts his ears to be subjected to these noises.

4. Ordering
If you are familiar with the restaurant, or already know what your child is going to eat, then by all means, order with your drinks.  There's no need for the waitress/waiter to take the orders all at once.  If you don't need to see the menu to make a decision, then by all means, get the food on it's way. I know my boys take forever to eat, plus get bored waiting. Letting them get their food quicker is a bonus for everyone! If they are verbal, then let them order for themselves, if they want to. Being able to order food at a restaurant is a very important life skill that may require lots of practice.  It's important that they feel confident and encouraged without judgement.

5. Waiting....
Before you leave the house you should pack an entertainment bag of some sorts.  Bubby is old enough to remember his own, which now consists of his DS.  I used to allow him to pick 2 or 3 Thomas Trains to take to play with, or some other toys that were small and easy to pack up.  Beans doesn't play with toys, but likes to tap on random objects.  Cardboard being his favorite, especially the little boxes gum comes in.  I save those for restaurant and shopping only. They're tiny and novel, because he doesn't get them everyday.  People stare. I let them. They will do that more and more as he gets older and his voice continues to deepen when he makes his noises and taps at everything.  If he gets to loud I remind him he needs to use a 'quiet mouth' but I have no idea if he even understands me.

6. Manners.
This is more meant for parents than the children here.  It's up to us to model appropriate behavior for our kids and to let them know what they can and can't do.  If your ASD child is going into meltdown (and you know what that looks like) and can't get calmed down in less than 5 minutes, then please take them outside to walk around or to sit in the car to calm down.  There was not one time before my son was 5 that my husband and I didn't have to take turns eating at restaurants due to having to take Bubby out to cool down during his many meltdowns.  It's not okay to let your kid scream bloody murder in public and ruin everyone else's meal.  Also, even ASD kids need to learn that it's not okay to scream like that in public.  Meltdowns are to be dealt with with dignity, not in front of a gaping audience.

The same goes for letting your child run around a restaurant.  Not okay.  It's disruptive and someone could get hurt.  I've seen other ASD parents do this before, then proceed to hand out their Autism Awareness cards.  I find that sort of awareness humiliating.  My boys were sitting there nicely while theirs were running around, making all sorts of noise and got so far ahead of them he ran out into the parking lot.  Sometimes, ASD kids do need to move, and it's okay to walk around with them holding their hand, or even take them outside and walk a few minutes if they need to.  I have to do this at times with Beans, though thankfully not Bubby anymore.

I hope that helps make your next dining out experience a little more enjoyable. Let me know if you have any questions or would like to share some tips of your own.

Different Perspectives: Dining Out

This entry I would like to discuss dining out and how that might effect someone on the spectrum.  I'm using the word 'person' instead of child, because I find that they sensory experience can be daunting for autistic children and adults alike.  I will also follow up this entry with a some practical ideas to help make dining out more enjoyable of an experience for everyone.

NT Perspective:
I admit that I don't know exactly how NTs feel while having dinner out... I'm guessing that they have a filter that easily filters out most of the background noise, thus freeing them up to socialize.   They can listen to the music, talk to friends and enjoy their meal all at the same time.  This tends to be a very popular and enjoyable multi-sensory experience for them.  Good food and good company seems to be a pretty common goal for most social experiences.

Autistic Perspective:
For someone with autism dining out can be enjoyable, but is often filled with anxiety.  Oftentimes, some people on the spectrum are very uneasy trying someplace new. They might be unsure if they will like what's on the menu, or how it is prepared.  (Remember, we can get so tripped up in our anxiety that we forget that the current situation isn't forever and that there may be another option that we aren't thinking about at that moment,)  Once inside, there might be a wait, which for young kids on the spectrum might be too much to deal with.  Most restaurants have music playing, which is extraordinarily loud to most of us.  I often find that I can't hear over the music to be able to listen to conversations.  Too much sensory input starts making everything get all garbled. When that happens my head starts feeling confused and cloudy.  I might get irritable.  Very low light bothers me when it's arranged in certain ways.  I don't know how to explain it differently, other than there are some lighting fixtures and arrangements that bother my eyes.  Sitting still in a booth or table can be challenging for on the move types.  This isn't squirmy like all kids get, but a real sensory need to move around and physically interact with one's environment.  I almost always feel cold in restaurants, which make it harder for me to deal with other sensory stimuli that is unpleasant.

With all that being said, my family and I really do like to go out to eat.  It took lots of effort and trials and errors before we have found some workable solutions to some of these issues I've discussed here.  I'll be outlining some of these ideas, and suggestions in my next entry.

Thursday, October 6, 2011

Injustice and Inequality

If you live in the United States you might have heard of the new Occupy Wall Street movement.  Maybe.  It's possible you haven't even though last night over 20,000 protesters marched in New York as well as thousands of others in other cities around the United States.  The media has largely ignored this group of people that have literally moved into an area park by Wall Street.  Most states have their own Occupy [insert city name here] where you can go to protest in your own public space near you.  This page here has the full written text of what this movement is about.  You can also go to youtube and watch the speech as it was given. 

The purpose of my writing this is not to talk a bunch of politics, but to speak about what is happening here in America.  To add my voice to the 99% of those who are crumbling under economic pressure to pay a debt we didn't incur. To speak up against bailouts that we still are holding the bag for while those responsible get away with obnoxious bonuses and no consequences. Those of us who while buying groceries know damn well there won't be enough for rent, or mortgage, and utilities, while the top percent live well off of our hard work. 

My husband, after 9 yrs of back breaking labor, long hours and unwavering loyalty got laid off of his job.  This was after a few other financial emergencies.  We are now in the process of filing bankruptcy.  We are one of the lucky ones that we have incurred debt that can be forgiven.  If everything goes well, we might be able to keep our house and my husband's work vehicle.  We did all the right things.  My husband worked hard and I stayed home to care for our special needs kids.  We live very modestly.  Most of the possessions I own are second hand.  This debt that we fell under wasn't borne out of luxury. My kids have state health care.  My husband and I have none. Everyday, I am terrified one of us will get sick and we won't be able to go to the doctor, or afford proper healthcare.We live sometimes day to day trying to keep food on the table and clothes on our kids backs.My husband works 7 days a week, sometimes up to 13 hours a day.  The cost of living when combined with wages that are not even close to being equal spells out failure for the working class.  Everything goes up, except wages, and that's if you're lucky enough to be able to find a job.  Thousands of people out there are straddled with thousands of dollars of school loan debt that they can't pay, because they can't find a job, and the jobs they can get isn't near enough to pay their debt, nor is it using any of the degrees they worked their ass of to get and now can't use.

All this is bad, but what I fear for most is the future of my children.  Especially, Beans.  I'm well aware of the fact that he will need 24 hours assistance for the rest of his life.  I'm already seeing social security fall apart, with no money to pay for public services like what he is going to need.  I'm terrified that there will be no one to care for him as an adult, or worse, he will be institutionalized in a facility that society can't keep up with, meaning extremely poor conditions.  When there's not enough to go around the most vulnerable will be the ones to suffer the most. That's how it is. Even now, I'm well aware of the ones that are going hungry because they can't afford to pay for a public service like Meals On Wheels, yet they are too disabled to make food for themselves.  The safety net is gone, and basic human needs are going unmet, everyday in this country.  I'm afraid that if things don't change, things will be much worse for my children as adults, and many others like them.

Saturday, October 1, 2011

Different Perspectives: Eye Contact

On this Different Perspectives I'd like to talk a little bit about eye contact and what it might mean to NTs and autistics.  As always, I am only me, so I may or may not be in sync with your experience, or the autistic person in your life.  We're all a little different, but I like to do these Perspective posts about my experiences as well as based on some of the common things I've heard from others on and off the spectrum.  I'm always a little more than worried that I am going to get a hoard of comments saying that what I write doesn't fit their experiences, ect, ect... So,,, with that dislcaimer out of the way, let's talk about eye contact.

Eye Contact for Neurotypicals:
Eye contact for a typical person is a way of communicating.  They can cue into emotions, thoughts, and other nonverbal cues just by looking at each other's eyes.  It's a show of respect and attentiveness to make eye contact with someone as you converse.  No eye contact, or broken/poor eye contact also holds meaning to typical people in the way of nonverbal communication.  It can mean the other person is bored, or finds you unimportant.  It can mean they're shy, or anxious. Poor eye contact can also be indicative of dishonesty, as one doesn't want others to read that they may be lying in their eyes they may look away while fibbing, or ashamed.  To people not on the spectrum eye contact is just as important as the words we use to speak.  So much meaning is attributed to eye gaze!

Eye contact for People on the Autism Spectrum:
I've heard some autistic people describe looking into other people's eyes painful, like looking into the sun.  For me, it's an emotional pain. It feels overwhelming, like a switch gets flipped inside my head and I hear, nor feel anything else. My adrenaline goes up, and I feel like running away. I will look away as a way to ease this and to pay attention to the other person.  I can't hear and look at another person at the same time.  It feel to me like a gross invasion of my space, of my being.  It feels like someone is taking something from me which is so personal and part of me.  Something that I am not willingly giving, but is being taken by force. It feels so personally invasive, as if someone is reading my thoughts without my permission.  I obviously know that no one can, or is, but it feels like they are.  If I am having to feign eye contact for something important, say a job interview or something similar, I am too busy counting seconds and trying to be appropriate with the amount of eye contact that I'm avoiding staring or looking inattentive, yet I am being very [preoccupied with all of this to the point that the very thing NTs  do to show attention is the opposite of what I am doing.  There is no point to doing it, as it doesn't indicate my level of attention, nor will I ever get any kind of communication from it.  It is purely for show, and is quite painful for most on the autism spectrum.



I would urge parents to think about this before making eye contact a big deal with their ASD kids, or a part of their therapy plan.  I know it is common for speech paths in particular to bring a desired or requested item up to their eyes making the child fix eye gaze before receiving the item.  I will not allow such methods to be used with my boys.  To me, it is disrespecting who they are and their rights to feel safe, and have their personal space.  I'd never allow anyone to do anything to them repetitively that makes them feel antagonized, or fearful, yet this is exactly how eye contact makes most on the spectrum feel.

With that being said, there are some situations where an adult on the spectrum may need help learning how to feign eye contact.  I mentioned job interviews, earlier.  That one is a biggie, becasue as unfair as it seems, that few minutes of nonverbal communication is crucial to whether or not a company is going to consider hiring you or not, even if you have a killer resume.  Unfortunately, I do feel that this is much more of a stigma for males than females, who might come off as passive, shy, and maybe a bit submissive if they don't make as much eye contact.  Males might look the same (which unfair as it is, will be held against them) as well as other more devious characteristics might also be wrongly assumed by an interviewer.

I'd love to hear your thoughts about eye contact and what it means to you.