We are more than just a color or a puzzle piece we are a spectrum

I know that when people see the “light it up blue” and the “Autism puzzle piece” they think that is it – that is what Autism is about.  I am here to tell you that is NOT all that we are about or all that represents us.  We are more then the color blue – which is synonymous with Autism Speaks and frankly I wish they wouldn’t and would disappear, we are more than facts, figures, studies and puzzles pieces.

We are first and foremost PEOPLE – we are from all corners of the globe, from every kind of background – rich or poor it doesn’t matter, we are of all different backgrounds, we are young and old…we are in essence a spectrum.  There are bright times like bright colors, and dark times like darker colors – and everything and color in between.

We have so much more to show the world than a color and puzzle piece and a bunch of facts and figures.  We see the world in so many different ways…from the most intricate things to the way things sound and feel.  We often feel so much more – and are so full of awe and wonder.  We are smart, funny, hold down jobs, have families, go to school etc…we are a lot like everyone else but we come with a lot more complexities.
In the end we are more than what you read in the news.  We are complex and sometimes puzzling, sometimes the world is the same way to us.  But don’t just think you got us figured out from what you read and hear – best way to get to know more is talk to someone on the spectrum – and remember just because you talk to one person don’t just assume that is how we all are – after all it’s a spectrum for a reason.  Just accept us for who we are and what we represent – we are all made of the same things – we are all people…a little kindness and acceptance goes a long ways!autism_support

We all struggle sometimes

In life there are struggles, no one is going to deny that, some are not so difficult and some – some challenge you to the brink and back.  Most people can muddle through without any big issues and others well when we struggle – we hit a wall and we hit it hard.  It can feel like the world is crumbling down on us and we are trying to hold it all together.

Some people can take a step back and regroup ok, some of us require more time and others well we retreat into ourselves, hide from the world even if it means that some of those around us get upset or hurt at our actions.  It’s a defense mechanism – when things get to overwhelming and crazy we tend to hide from it until we are better able to process the feelings and situation.  We are kind of knee jerk reaction people more often than not, we go all in without a second thought.  I guess you could say when we commit to something we really commit – the good, bad and ugly – we are in it up to our eyes.  Problem being is that once we realize just how far into something we have gotten we look like deer in the headlights.  We quickly withdraw into our own little cocoon’s so to speak where we feel comfortable and secure and slowly we begin to try and make sense of things.

Sometimes it means regressions, sometimes aggressions, sometimes we stop talking much and seem distant and moody.  We struggle to hold onto things while trying to make sense of the rest of it.  Think of a Kangaroo and her Joey in her pouch – when the world is crazy and the little guy is scared he hides out in Mom’s pouch while he calms down and tries to make sense of the big noisy busy world.  He feels safe, secure and like nothing can hurt him.  It may mean he doesn’t learn things as quickly as the others or that he forgets some things his Mom has taught him already but none of that matters right then – what matters is he feels safe and the world isn’t so crazy in there.

Kids and adults a like on the spectrum tend to retreat or withdraw into their safe place when things become to much.  It could be a bunch of little things like being stuck inside due to weather more than you are used to, or dropping something and then spilling something else later and then a bunch of other things that have built up over a bit of time come spilling out in one big messy emotional waterfall and we just shut down.

We will often push people we care about a lot away one minute and the next we are upset that we did and want them back near us for support.  We tend to be yo-yo’s with our emotions like we are all teenage girls feeling devastated by our first heartbreak.  We feel angry, hurt, sad and frustrated – it’s just a big messy pile of jumbled emotions all running through our mind and hearts at once.  Truth be told we don’t really know what we want exactly and as someone on the outside looking in I am sure it feels like it’s just a lot of drama over nothing.

While we can be dramatic – it’s not always a struggle to cause drama we often are just overwhelmed by life, the social interactions, the always trying to keep up “appearances”, always trying to navigate a world where not much is what it seems, where people don’t always say what the mean or mean what they say.  Try processing all that on a minute by minute basis and wondering if you over thought it or under thought it.  Wishing the world would just bloody well make sense for once so you could just catch a break.

Sometimes we just need to retreat and find our calm happy place so we can proceed forward again when we are better able to cope.  Just try to understand and be there when we need someone…we will come around just give us a bit of time to work through whatever it is that is bothering us.

Navigating services feels more like a hostage negotiation

As a parent of two girls on the spectrum I often feel that trying to get them any kind of help is much more complicated than it needs to be.  Those with money can afford private services – but even that is hard to navigate.  People apply and don’t show, people show up and then do one or two shifts and never call or show up again.  You end up on so many wait lists and navigating so many things that you feel like there are more directions than there are ways to get there.

I sometimes feel like we need to be hostage negotiators and quite often we are also the hostages trying to negotiate our own release so to speak.  Kids need support – as parents we can help them but we to need to step back and be parents and not their speech therapist, their OT and PT etc.  Our lives are already busy and stressful and at some point in the day we need to step back and decompress just as much as they do.

In this household it’s even more essential that I can get that time in for me.  Between the Aspergers, Anxiety and all the medical issues I have and then Kevin’s PDD-NOS and his other health issues and the kids ASD and ADHD and two of them with Diabetes I never get to just relax.  Now I do prefer to manage their medical issues myself because I know what is needed when it is needed and how things have to be done.

I had to take it upon myself to help Kiana last year when the services we were getting were not helping her make much progress.  From September to June they tried to get her toilet trained with our help, they tried to get her to take her jacket and shoes/boots off and to be more safe outside when crossing the road etc (still working on that from time to time) and one step directions.  But we managed to get her toilet trained day/night and road trips before September, we managed to get her to cooperate for the most part when going out and she knows the routine for the mornings and she has been sleeping through the night and going to bed at decent times – all the things they could not accomplish with us – we did it without them.  But again it has it’s challenges because I am the parent.

I know I managed to get by in life all these years without therapy I managed to do what I could to get by in school but it wasn’t easy and I still struggle.  I want better than that for my kids – they don’t need to struggle so badly when there is help available to them.  I just wish the “system” that is there to help the kids, and us as parents didn’t hold us hostage.  I just need to catch a break somehow because this Aspie and Mom is just burning out real quickly.  It’s not ok to make the kids suffer and us parents more stressed than need be.  There needs to be a better way to do things for everyone involved.

Dealing with the co-morbid conditions – Sensory Processing Disorder/ADHD

Since I had no idea growing up what things like ADHD, SPD, ASD, OCD etc were I was mostly labeled as a “problem” child that is “stubborn” and “wont listen or do her work”, “often shuts down and wont cooperate” – I still have ALL my elementary report cards – those terms and phrases crop up more often than not.  It was what it was.

The same thing applied at home when I wouldn’t eat certain foods due to their smell, taste or texture.  It’s not like I enjoyed that or anything – and it’s not like I can change how my brain perceives these things because man did I try.  But often I would be yelled at, forced to eat things I couldn’t handle until I gagged and sometimes threw up because well that is how it was.  I couldn’t tell them how it really was for me – like someone was making me eat sewage because they didn’t understand why and likely I would have offended my Mom’s cooking – even though it wasn’t that.

With the kids now I try to push them to try a bit of something – I give them a tiny bit of it and I get them to try it – sniff it, lick it, chew it a bit whatever…if they still don’t then ok we will revisit it another time.

Sensory issues are tough to tackle sometimes, what sets us off one time may not the next or the one after that – then suddenly it does again.  A lot of people don’t realize why this is.  It’s pretty simple yet complicated, it depends on the time of day for one, the early the day the less likely it is to set us off as much as later in the day.  By later in the day we have had to process so much already, we are exhausted, restless, agitate a bit and things get to us easier and faster when in that state.  It can also happen in the early mornings if we didn’t get a good sleep – just not able to process things well enough and are frustrated by things easily.  Another factor is what else is going on around us – if there is a lot of chaos and commotion it can be hard for us to process what is needed of us at that moment.  Sometimes we need to remove ourselves from the situation in order to decompress and sort through things.

Now add in things like ADD/ADHD and things become exponentially more complicated for the sensory seeker/avoider.  While on one hand we are impulsive with ADHD we may be an avoider when it comes to a lot of sensory things.  We can also be a seeker and add in the impulse control or lack of in a lot of cases and you have an extremely crazy situation.  We tend to be like a bull that see’s something moving – we just charge right ahead and often it becomes a act now think later situation.   Now we may know better than to say jump on furniture or dart into traffic – most kids do Autism or not – what compels them is the impulse to just run – the feeling of adrenaline and the rush that happens – that is what compels them to do this they cannot fight the urge.

I used to think it was that Kiana didn’t understand – and then Kalea – but as soon as Kalea started doing it – even though Kiana had never shown awareness for the danger – she started grabbing onto Kalea and telling her no that’s not safe don’t do that.  All along Kiana had gotten our safety lessons – she just didn’t show us until she had someone else that was littler to help learn these that she let us know she had understood.

Understanding and then reciprocating that is often difficult for us.  Social stories, tv shows, apps etc – sure we can emulate what we see BUT putting it into use or showing someone outside of that controlled environment is a whole new situation.  Now not all of us on the spectrum will get it – there are some that have a functioning level below that and have limited ability to process and understand multi step things.

ADHD makes it hard for us to focus – but that doesn’t mean we don’t hear you.  Our brains are so busy we tend to just process parts of what are said and while that is going on we are processing bits of the rest of things that are going on arund us.  Now for us Aspies that is a task and a half…we struggle with processing things at a rapid speed like others – so often a good portion of things said or what is meant is lost in translation.  What we hear or process can often be way off of what was actually said or meant.

What helps is if we are given ONLY what is exactly needed – not a lot of fluff or fillers, the more you throw at us the less we hear.  It’s not that we are trying to be rude but we can only process so much before we just kind of shut things out so we can figure out what was already said.  Just don’t confuse us with a bunch of things that don’t need to be there – it makes us agitated and frustrated.  It’s not personal it’s just how our brains are wired.

Best advice I got is break things down into chunks and let it rattle around in our brains a bit before adding more or asking us a bunch of questions.  We are thinkers, often deep thinkers, if someone interrupts one of our “moments” where we are deep thinking and processing – it doesn’t go well.  Staring off into space is often us deep thinking/processing what is going on deep inside our brains and not us just staring off into nowhere like we are gapping out – rarely do we “gap out” we deep think and process 🙂  Life as an Aspie with co-morbid conditions can be a challenge but hey that’s life 🙂

Our need to be heard as adults on the spectrum

Rewind about 25 years ago, it was the early 90’s (1991), the words Autism, ADHD, Sensory Processing Disorder etc were never heard.  If you couldn’t keep up with your school work you were “lazy”, if we acted out we were sent to the hall or the Principals office, if we shut down in class because we were overwhelmed with the noise we were said to be insubordinate and had to stay in at recess and lunch to do our work (which wasn’t always so bad). 

I remember it all like it was yesterday – the Aspie mind has a knack for holding on to info and storing it away to be recalled later.  I remember my constant need to arrange the inside of my desk – biggest books on the bottom all the way to the smallest on top – pencil box on one side and so on, pencils lined up on the ledge of the inside of the desk, ruler eraser etc.  If my desk was organized how I needed it I could function better and wouldn’t feel so anxious.

Sometimes by the end of the day my brain would be so fried I would put my head down on my desk and close my eyes and just try to decompress as best I could.  In grade 2 I was held back – the few friends I had made went on to the next grade without me and none of us were ever friends again even though we ended up in split classes throughout Elementary School.  It was hard on me – it was due to my Mathematical skills, my social skills and emotional age that I was held back.  I remember the day – last day of classes and the rest of the kids were gone and my teacher Miss. M calls me to the back to sit beside her desk.  It was sunny the lights were off in the class, the smell of popcorn we had eaten while watching a movie was still in the air.  I remember staring out the window and she talked to me and explained what was going to happen the next year.  I remember crying because it stung.

We didn’t have IEP’s, therapy, and unless you were handicapped mentally you didn’t get an aide either.  I carried that guilt around for a long time, like I was a failure. 

Now fast forward to today, IEP’s, 504 plans, terms like SPD, ADHD, ASD, Aspergers are common place in schools, there are things like early intervention and Autism Societies and even the internet (Facebook etc) where we can reach out and get support.  I had nowhere to turn when I was struggling – I would get so angry because I just didn’t want to be so different from those around me anymore.  I hated life for a long time.

I think it is important for us adults on the spectrum to be heard, to help pave a smoother road for those behind us, to show that there is no magic age that suddenly Autism/Aspergers ceases to be a thing.  It doesn’t just go away suddenly because the government and service providers think we shouldn’t need help anymore.  There are so few programs for those over 18 that the ones that exist can only handle so many people, leaving many many others without vital supports they need to transition to and maintain independence.

We need MORE help not just for the kids but the adults – with the surge in Autism diagnosis’ what happens when they all start to age out of services.  We can attest to how difficult it is without the right supports in place. how few places will hire a person on the spectrum, how hard it is to navigate the busy constantly changing world around us.  We cannot always have our parents there to fall back on, some just wont be able to keep on being the therapists and the parents and the financial and emotional support 24/7.  It is hard enough on a parent now – fighting for services for kids – imagine at 18 when suddenly there really isn’t anywhere to get support. 

For myself I was forced into “assimilation” so to speak – I was reprimanded for being different and I hid so much of it for so long that when my Dr. finally gave me the official dx I felt better but that still doesn’t make up for how hard it was growing up.  I was beat up, hair lit on fire, nose broken, fingers broken – the minute my “weird” showed it was game over.  I actually spent more time with the guys playing Hockey or Soccer it was easier to fit in with them than the girls – they didn’t judge as harshly.  But times are different and I know for myself and Kevin it’s a daily struggle and causes a lot of frustrations. 

We need a voice – we deserve to be heard to because we can attest to the daily struggles and difficulties that go on because there really isn’t anywhere to turn and even Access Mental Health here doesn’t offer much help only if one is feeling suicidal but really one should never have to get to that point just to get support. 

We have had a rougher road in so many ways – we need to help those behind us and have a voice so that those aging out now don’t have to go without decent supports just because they turned a certain age.  Autism doesn’t stop at a certain age why should getting support…

Relationships and Autism/Aspergers – A whole spectrum of possibilites

One thing I have had to tackle in my time is the awkwardness of a relationship.  Being that a lot of us that have Aspergers tend to be way more trusting and naive.  We are so black and white that we often forget that so many people are not and often don’t have the best intentions.  We are often like bulls in a china shop so to speak we are all in so fast because we realize someone is paying attention to us and not mocking us etc like we are used to.

That leads to the other half of the equation when we realize our feelings are growing and we are feeling all these strange feelings we suddenly pull back.  We take longer to sort through the things that are going on with us, and often we will go through periods of where we are going along just fine with things and then something else comes up – another feeling we are unsure of or the dynamic changes again and we tend to pull back.

It can feel like cat and mouse but for us it is how we process things.  With every new feeling or situation we need to step back and process it and get comfortable with things.  Sometimes it can seem like we are not interested but really it’s just us trying to get comfortable with the situation in our own way.  Feelings are big and scary and for us we already struggle with that kind of thing so we definitely need someone that can be patient with us and understand we are complex.

We can often appear to be immature and difficult to connect with – but we kind of have the same problem when it comes to the other person.  It takes someone pretty awesome to be able to handle all our back and forth and indecisiveness – we can be rather hard to rein in at times.

I was in grade 12 when I met my son’s father – things were pretty good – so many feelings to work through and process all the time.  We dated off and on for a few years and it got really messy and complicated when I got pregnant when I was 21.  I had a lot to process when it comes to that let me tell you.

I still struggle with interpersonal relationships, due to the sheer amount of times I have been burned and hurt bad I kind of get a bit standoffish when it comes to people and any kind of friendship etc.  People may see this as being difficult but as anyone that has been hurt so much they would tend to tell you that they would rather be like that than keep being a target.  But if you can earn our trust you will find we are loyal to a fault and although we can be complex we definitely make things interesting.

The important thing to remember is that we process things at a slower rate when it comes to socially what is expected of us and even more so when it comes to romance.  It’s a complicated thing and feelings can cloud judgement – and for an Aspie that is already something we struggle with.  If you got the patience we will be forever thankful that someone was willing to work with us on things and be there for the long haul.

If things go south – well let me tell you it gets all kinds of messy.  We feel hurt a lot more intensely and it can last a lot longer than our NT counterparts.  It’s like a family member just died – so if we can’t seem to “just get over it” it’s because we really need to work through our grief.  Trusting someone enough to want to be involved with them on a deeper level takes so so much processing power that we often feel mentally drained at the end of the date etc. so imagine the intense feelings we would have after a break up.

We can harbor resentment and anger for a looonnnnggg time and hold a grudge for years.  We don’t deal well with that kind of thing as it is hard for us to understand how someone we trusted so much could hurt us like that.  We can get very depressed and withdrawn.  Sometimes we feel suicidal because we feel so deeply all these hurt ugly feelings that are making us sad beyond what our brains can comprehend.   It could be the worlds best break up ever and we would still feel like it was the worst thing to ever happen to anyone.

So try to understand – we are great partners you just have to be the kind of person that can handle these things and help us learn the give and take of a relationship if that is what it comes to.  We need direct info – we don’t really take hints well so don’t be afraid to just tell us things – no fluff needed as it makes it so much easier for all involved.  It may hurt sometimes but in the end honesty is appreciated and loyalty to.  We can be a lot to handle but we sure as heck are fun!

Hitting the wall – when our emotions fuel our actions

Sometimes those on the spectrum push those they care about the most away from them because they are hurting or extremely stressed and full of anxiety. When others would seek these people out for comfort we tend to do the opposite. We often find it easier to process our emotional baggage so to speak without a lot of “clutter” to deal with.

Other times we NEED to talk about it…over and over until we can come to terms with things. It can drive people around us a bit batty.  We just deal with different situations and the “fall out” differently at different times.  Sometimes we do both – push people away and want to talk to them about what we are feeling – even more so sometimes if that person is directly involved.  We want to get out how it made us feel but the words often don’t come out right or at all.  But for some reason we cannot let it go – we push more to get our point across.  We are impulsive at times and that only adds fuel to the fire.  It’s not that we want to do this – it’s that we are so overwhelmed by the situation and the emotional turmoil coming from it that we just go all in without even a second thought.  We don’t always process the consequences well – we just think about how we feel in that moment and how that situation is bothering us and we don’t rationalize what might happen.  Often we find ourselves even deeper into an ugly mess than we were to begin with and it frustrates us more so then more frustration and anger build up about it.  Seriously sometimes it is like we are puppies chasing our tails around – just creating more problems than there need be but the urge to keep going is so overwhelming we can’t seem to help ourselves – even if we know better – it’s a real nightmare sometimes let me tell you.

We push and push sometimes until we push so hard these people are mad at us for acting in what to them seems like a hostile way. Sometimes people step back and calmer heads prevail and sometimes we push these people too far and there is no going back.

When that line has been crossed and we realize in our own angst we lost what had been a great friendship which are already hard enough to maintain with non spectrum people; it can really send us into what I call the minefield of emotional turmoil.

A smell, a song, a color, a number etc can set us off into a flood of emotion so strong it overwhelms us. Anger over losing a friend, sadness, a short lived happiness of things you remember about the friendship, more sadness at remembering those happy times and then “the wall” happens. When all your pent up emotions about everything that is bothering you hit you like a car slamming into a wall.

Some of us Aspies feel so much and so fast it’s so overwhelming. For us losing a friendship is like a death of a family member or beloved pet or even losing something we held so important in our lives (favorite pencil, book, shirt etc) that we shut down and don’t want to let anyone into our world. For most not on the spectrum they see it as silly and that we need to just get over it but we can’t

We are consumed by the flood of emotions and we need to process those one by one in our own time. We often try to hold it together for so long as to try not to show others what we are going through on the inside that we bust wide open like a dam breaking.

I often envy those that don’t have this trait it’s not fun. If I could remain indifferent to things and not push people away because I don’t know what else to do, I’d be much happier. The ones with this trait are more likely to suffer from depression, PTSD and be extremely anxious people. High functioning or not we got our own crosses to bare and they can be real rough.

Trudging through the minefield that is the Aspie mind

One thing I have learned over the years – the Aspie mind is like a minefield – you just never know what will set the brain into motion and cause hours if not days maybe weeks of worrying/stressing/feeling angry/hurt/frustrated.  It could be something as simple as how someone looked at us or maybe it wasn’t even us but we thought it was.  As you get older the things that can set this sort of thing in motion are a lot more entailed.

Often times we tend to push things to far and people to, we have a hard time stepping back and seeing the bigger picture and we don’t realize just how big of an impact our actions can have.  Not all impacts are good let me tell you sometimes they can really come back to bite you in the butt and not in a nice way not that getting bit in the butt is nice.  Sometimes we push and push until we push the very things/people we wanted to keep around away.

It’s not really cat and mouse it’s just we don’t know how to figure out the words to tell someone that you still want them around but right now it’s best if they are not because you are going through stuff and before you say something that you can’t take back it’s best that it’s left for now.  Instead fueled by anger, hurt and frustration because we have a hard time processing the emotions fast enough we just let it ALL out – the good, the bad and the down right ugly.  Filter goes out the window and often with it any shred of keeping things together.

When all is said and done and we step back and have time to process what happened – we often feel remorse, we feel hurt because we hurt someone else and sadness because we can’t fix it.  It’s hard to know what to do sometimes, we struggle to do what is expected but because we push ourselves so much to do what others want out of us we often snap, and when we snap we go all out.  Some meltdown, some withdraw, some regress.

All you can do is be there, be supportive and be understanding or try to be.  Don’t push us, try to understand that we are not like others that are not on the spectrum – we handle life and it’s situations differently and even as an adult we still struggle with these things.  There is no magic age that suddenly all these things are no longer a problem it will always be a problem it just varies on how big of one.

Don’t shame us, just step back and give us some space to deal with our feelings – let our brains process what is going on and how we feel about it.  Check in on us – make sure we are ok if we are doing better with things – then discuss it with us – help us see what was going on – make sure we at least understand how it made you feel when we were like that but try to be kind about it – we can be really sensitive to things and likely would just feel worse about what happened.  Sometimes the best thing to do is find someone that gets it and that will be that ear that you need to talk to so you can work through the emotions and not feel like no one gets it.

Our minds are like minefields and there is no filter…it’s “balls to the wall” kind of thing.  We are full on all the time – our minds don’t take a brake and sometimes it’s overwhelming to us so we need time to decompress and process things.  When we are ready we will come to everyone and maybe want to talk about it maybe not…sometimes we are just done with things – most times – we don’t want to keep going over it we already beat ourselves up enough over it we don’t need to rehash it again.  We try so hard sometimes to do what everyone wants – but it’s so tiring trying to pretend all the time so try and be understanding to some degree or another.