Managing Autism - A Personal View

I mentioned in a post a couple of days ago, that my recent search for help and advice with Jack had people asking me where we usually turn for help and assistance when things get tough or ‘challenging’ or when we just need to talk through stuff…..

A friend of mine spoke to me recently about the troubles that she was facing with people close to her - that they were insensitive to her and her child in relation to her child’s autism.  She was becoming increasingly upset with the thoughtless remarks, and was at a loss as to what to do and how to approach the issue with these people… particularly when many of the insensitivities were displayed in public and she didn’t want to cause any problems between herself and these people…..

And I posted a while ago on a topic that many parents of children with autism face - that of being judged by others, and the grief of self judgement.

So all of this has had me thinking… when times are difficult and especially challenging with our children, when people are insensitive to our needs and our children’s needs, and when we’re going through the times of self-judgement and judgement from others - where do we go for support, and who do we find support from…?

… and then how do we deal with the unsupportive influences in our lives…?

I am very fortunate to have my parents who are very supportive of Jack’s needs and our needs as a family.  I also rely heavily on my blogging friends for a support network of others who are facing similar things in their lives - and who are very generous with advice and support!  I visit an online forum when I can, and I do have a couple of friends who I can call on for a ‘chat’ when things get tough and I need a friendly understanding face.

And of course, there are a couple of people close to us who really have no interest in recognising Jack’s Autism Spectrum Disorder, or maybe they do recognise it, but they just don’t stop to think that perhaps their thoughts and actions (or lack of thought and action) are hurtful and unsupportive…

But where else does the support come from?

Some of the professionals and therapists we have worked with over time have been incredibly supportive - both practically speaking and from an emotional aspect as well…

… but what do people do, and where do people go when they have little support around them?

… and how do people handle others around them who are totally insensitive… surely there must be a way to deal with the thoughtless remarks whilst still maintaining some sort of relationship with people.

I’d really love to hear people’s thoughts and ideas on this… for myself, for my friend, and for all of us…

… after all, we all need support.

With Jack approaching the start of his first year of school, we have been working with him on developing some strategies to help him in the classroom.

During our visit with Jack’s Speech Pathologist this week we worked on some strategies using ‘visuals’ to help Jack think through the steps involved in a task, and at the same time work independently.

I have to say, we have been totally blessed with Jack’s Speech Pathologist - in fact we couldn’t ask for better!  She is extremely warm, generous and supportive, and Jack has taken a real fancy to her (he really looks forward to going to therapy sessions).  Really, she has been a wonderful support all round - and at a time when we’ve especially needed it.

Anyway, Jack’s Speech Pathologist had put together some task boards for him to work with during the session (and for us to use as a starting point at home), and he took to the idea really well.  Although he wanted to negotiate on the order of some of the tasks to be completed, he was happy to work through the process.

The task boards also brought to our attention the fact that we need to look at re-doing Jack’s basic daily schedule here at home.  We put a basic schedule together for him some time ago, but have never been back to reassess it’s appropriateness as his needs developed.  But we can see from how he worked with the task boards that he is ready for his schedules to be more detailed and involved - and this should help settle him into a better routine as well.

So it’s off to the drawing board (or computer) with Jack’s schedules and task boards this weekend… well, we will tackle it a bit at a time anyway…

According to wikipedia, personal space refers to the space immediately around a person, that they consider their own. 

Two people not affecting each other’s personal space.

Reaction of two people whose personal space are in conflict. (Wikipedia)

It can be difficult to work out Your Own Personal Space - and this can be especially so if you have autistic tendencies and struggle to understand social cues.

Personal Space has been an ongoing battle for us for quite some time - being quite affectionate, Jack struggles to understand the concept of personal space.

Our 2 kids have grown up in an environment where affection is openly displayed - in both our immediate and extended family they are constantly exposed to hugging and friendly pats on the shoulder/back etc.  We consider ourselves blessed that Jack is open to being hugged (although on his terms!) however as he prepares to step into the world of school and broader social contact, the issue of understanding personal space has arisen.

Jack has a habit of grabbing people and hugging them… anyone from the neighbours, to acquaintances, to other children in his Kindergarten class.  As a young child this brought comments of “how cute!” or “what a darling!”, but as he is getting older it is becoming “strange” or “rude”.

We use the idea of an ‘arms length’ distance from people, when trying to explain to Jack about what is an appropriate space to be from someone.  We also talk about the fact that we need to ask someone’s permission before we touch them or ‘go into their space’ but still the concept evades him.

Our social stories have been quite basic in this area to this point so we are about to ’step them up a notch’ and include some role playing (perhaps even video recording the role plays so that he can watch them in action over and over again).

So if anyone has any thoughts or advice on strategies that they have used in this area, or any ideas on things that might work we would love to hear - that is, of course, only if this request doesn’t invade your personal space!!!

Joy at Joy’s Autism Blog recently posted this letter on her blog.  The idea is to use it to prepare your family and friends who you will be seeing over the holiday season (particularly those who you don’t see often - or who haven’t met your child before) about what to expect with your child who has autism.

It could be especially helpful to those who are new to the diagnosis.    

Thanks Joy for sharing!

    

It’s long but you can tailer it to fit your needs. Someone from the autism support group emailed this to me and will really come in handy.

HOLIDAY LETTER TO RELATIVES TO PROVIDE INFORMATION ABOUT YOUR CHILD AND AUTISM

“Dear Family and Friends:”

This was written for the purpose of it being sent to relatives, friends,

and hosts of holiday gatherings that might need a crash course in what to

expect from their guest with autism. This letter is written as if the

autistic individual person is writing it personally.

>

Dear Family and Friends:

>

> I understand that we will be visiting each other for the holidays this

year! Sometimes these visits can be very hard for me, but here is some

information that might help our visit to be more successful. As you probably

know, a hidden disability called autism, or what some people refer to as a

Pervasive

> Developmental Disorder (PDD), challenges me. Autism/PDD is a

> neurodevelopment disorder, which makes it hard for me to understand

> the environment around me. I have barriers in my brain that you

> can’t see, but which make it difficult for me to adapt to my

> surroundings.

>

> Thanksgiving & Christmas is one of the roughest holidays for me.

> With large crowds and holiday shopping it can be very overwhelming,

> even a bit scary. When planning a party remember that with my over

> sensitive hearing and eye sight, Christmas trees and holiday smells

> can cause me mild to severe pain or discomfort. If the noises are

> impossible to control a personal stereo with headphones set to a

> safe level for children may help drown out background noise and ease

> my discomfort.

>

> Sometimes I may seem rude and abrupt, but it is only that because I

> have to try so hard to understand people and at the same time, make

> myself understood. People with autism have different abilities: some

> may not speak, some write beautiful poetry, others are whizzes in

> math (Albert Einstein was thought to be autistic), or may have

> difficulty making friends. We are all different and need various

> degrees of support.

>

> Sometimes when I am touched unexpectedly, it might feel painful and

> make me want to run away. I get easily frustrated too. Being with

> lots of other people is like standing next to a moving freight train

> and trying to decide how and when to jump aboard. I feel frightened

> and confused a lot of the time. This is why I need to have things

> the same as much as possible. Once I learn how things happen, I can

> get by OK. But if something, anything, changes, then I have to

> relearn the situation all over again! It is very hard.

>

> When you try to talk to me, I often can’t understand what you say

> because there is a lot of distraction around. I have to concentrate

> very hard to hear and understand one thing at a time. You might

> think I am ignoring you-I am not. Rather, I am hearing everything

> and not knowing what is most important to respond to.

>

> Holidays are exceptionally hard because there are so many different

> people, places, and things going on that are out of my ordinary

> realm. This may be fun and adventurous for most people, but for me,

> it’s very hard work and can be extremely stressful. I often have to

> get away from all the commotion to calm down. It would be great if

> you had a private place set up to where I could retreat.

>

> If I cannot sit at the meal table, do not think I am misbehaving or

> that my parents have no control over me. Sitting in one place for

> even five minutes is often impossible for me. I feel so antsy and

> overwhelmed by all the smells, sounds, and people–I just have to

> get up and move about. Please don’t hold up your meal for me–go on

> without me, and my parents will handle the situation the best way

> they know how.

>

> Eating in general is hard for me. If you understand that autism is a

> sensory processing disorder, it’s no wonder eating is a problem!

> Think of all the senses involved with eating. Sight, smell, taste,

> touch, AND all the complicated mechanics that are involved. Chewing

> and swallowing is something that a lot of people with autism have

> trouble with. I am not being picky-I literally cannot eat certain

> foods as my sensory system and/or oral motor

> coordination is impaired. Don’t be disappointed if Mom hasn’t

> dressed me in starch and bows. It’s because she knows how much stiff

> and frilly clothes can drive me buggy! I have to feel comfortable

> in my clothes or I will just be miserable. When I go to someone

> else’s house, I may appear bossy and controlling. In a sense, I am

> being controlling, because that is how I try to fit into the world

> around me (which is so hard to figure out!) Things have to be done

> in a way I am familiar with or else I might get confused and

> frustrated. It doesn’t mean you have to change the way you are doing

> things–just please be patient with me, and understanding of how I

> have to cope. Mom and Dad have no control over how my autism makes

> me feel inside. People with autism often have little

> things that they do to help themselves feel more comfortable. The

> grown ups call it “self regulation,” or “stimming’. I might rock,

> hum, flick my fingers, or any number of different things. I am not

> trying to be disruptive or weird. Again, I am doing what I have to

> do for my brain to adapt to your world. Sometimes I cannot stop

> myself from talking, singing, or doing an activity I enjoy. The

> grown-ups call this “perseverating” which is kind-a-like self-

> regulation or stimming. I do this only because I have found

> something to

> occupy myself that makes me feel comfortable. Perseverative

> behaviors are good to a certain degree because they help me calm

> down.

>

> Please be respectful to my Mom and Dad if they let me “stim” for a

> while as they know me best and what helps to calm me. Remember that

> my Mom and Dad have to watch me much more closely than the average

> child. This is for my own safety, and preservation of your

> possessions. It hurts my parents’ feelings to be criticized for

> being over protective, or condemned for not watching me close

> enough.  They are human and have been given an assignment intended

> for saints. My parents are good people and need your support.

>

> Holidays are filled with sights, sounds, and smells. The average

> household is turned into a busy, frantic, festive place. Remember

> that this may be fun for you, but it’s very hard work for me to

> conform. If I fall apart or act out in a way that you consider

> socially inappropriate, please remember that I don’t possess the

> neurological system that is required to follow some social rules. I

> am a unique person–an interesting person. I will find my place at

> this celebration that is comfortable for us all, as long as you’ll

> try to view the world through my eyes!

>

> *Author, Viki Gayhardt

We had our first meeting today with our local organisation that facilitates respite care for families in our area.  Even though Jack was given his official diagnosis quite a few months ago now, it has taken us some time to work our way through the list of ‘to do’s’ in relation to contacting and organising different organisations and specialists who are able to provide us with support for his autism.

The meeting went really well, and hopefully it won’t be too long before we have a carer who is able to provide us with some one on one much needed support.  The organisation has some great programs that we will be able to ease Jack into slowly, starting with a couple of hours a week spent out of the house with his carer.

It will be good to have the couple of hours break, having some time with Anna, and it will be great for Jack to have some time away from us with someone who is fresh and full of energy.  Hopefully the short time apart will leave us all feeling rejuvenated and ready to go again.

It will also be great just to have some moral and emotional support.  For the past few years we have had a Pre-School Field Officer who has been a wonderful support for us (working closely with our whole family), but with Jack starting school next year, she will have to close his file in the next few months - so we are happy knowing that there will be someone to take her place.

People often ask us the question, “how do you cope?” or “how do you do it?”

Usually they are referring to some issue relating to Jack’s autism spectrum disorder.

It’s funny, but our coping strategies for much of what we face have become such a normal everyday part of life that they no longer seem ‘a big deal’ or ‘autism related’.

Most parents have strategies in place to deal with challenges they face in relation to their child - this could be anything from difficult behaviours, to learning difficulties, to ’childhood fears’.  Parents have methods in place to help their child manage life in the best way they can.

Parents of a child with autism are no different.  Yes, many of the strategies may be more involved and specialised than those used for other children, and they may require more persistent use and focus, but overall they have the same purpose and are put in place for the same reasons - to help the child (and parent) manage life in the best way they can.

We often take for granted what we do on a daily basis.  Occasionally we might overhear a parent describing a tantrum that their child threw in the middle of the supermarket - usually the parent is mortified and completely at a loss as to how to manage such behaviour.  At these times we usually smile and reflect on how life evolves.  It is not our intention to disregard this other parents distress at all, but tantrums have become so ’second nature’ that we don’t stop to think about them much now.

As parents we adapt to what life presents us.  It’s only when we stop and look around us that we realise that everyone has challenges at different levels and that amazingly enough, the strategies that develop to manage and cope with these challenges simply become a way of life.

Parenting a child with an Autism Spectrum Disorder can be very intense.  Children with autism have special needs and many require more attention than a ‘typical’ child, and this can be extremely draining on a parent.  Keeping yourself in the best state to cope with the day to day parenting of a child with autism is really important.

Having regular ‘down time’ or time to yourself cannot be overlooked as a coping mechanism.  Whilst it is often difficult to find a replacement carer for a child with autism, it is worth seeking out a family member or friend who is willing to give even an hour or so of their time so as to enable a ‘break’.  We are lucky enough to have family members who take Jack for a ‘holiday’ (weekend) every 4 to 6 weeks just so that we can have a break from the day to day challenges and ‘intensity’ of life with Jack.

A healthy diet and rest is also vital.  Parenting a child with autism will require having plenty of energy and stamina, as these children often need attention around the clock.  Sleep can sometimes be difficult for children with autism - this in turn disturbs the parents sleep period.  For parents of autistic children who do struggle with sleep, rest breaks should be taken where possible and plenty of fresh food should be eaten to keep the body and mind in as best condition as possible.

As a parent of an autistic child, there will always be days that are more difficult than others, and times when things will fall apart.  But finding ways to cope with the day to day parenting of a child with autism is really important, and may help with a smoother transition in getting back on top of things if they do come crashing down around you.

We’re back on solid ground and ready to face a new week.

This weekend I have spent some time reflecting on life.  I’ve thought about how life can sometimes take such a hold of us that we get swept up in what is going on and can’t seem to break the cycle.  We keep going sometimes because it’s too difficult to stop or because we don’t know how to stop.  Or maybe it’s that we can’t see another option - I know I feel this way at times.

I have again come to the realisation (I get reminded of it every couple of months) that as parents we often push ourselves so hard that we forget to really take care of ourselves and our own needs.

So a task for today:

• Take some time, whether it be 5 minutes or half an hour, and use this time to do something for yourself.  Maybe walk outside and breathe in some fresh air, or take a bath, or get creative with some art work.  Refresh yourself with some regular ‘you’ time and your body and mind will thank you for it.

Parenting a child, especially a child with an autism spectrum disorder, is a very important and special job.  Love and nuture your child, but also remember to love and nuture yourself.

Some days feel like they will never end - you just keep wishing it was time for bed for no other reason than being able to say that the day is over.  In fact, sometimes it’s not just a day, but days that turn into a week or more.

Gloomy as it seems, this week has been a huge week of challenges, and being Friday night here in Australia I have to admit I’m counting down the hours until I can say, “this week is over”.  I’m putting my hand up to say that this week I have struggled, often feeling overwhelmed, but mostly feeling incredibly tired.

Parenting any child is hard work, but add autism to the mix and life becomes a different ball game.  Like other parents with children who have special needs, life is extremely busy and never what you could call easy.  Don’t get me wrong, I wouldn’t give my kids away for anything in the world, I love them both to bits.  But sometimes I feel like it all just gets too hard.

So I’m having a ‘fall in a heap’ weekend.  Chocolate is definitely involved, and my wonderful husband is taking some time off work next week to spend with me and the kids.  Life will go on, and I will battle on.  But days like today remind me that I’m only human, and it’s okay to say “I’m struggling right now, I need help”.

A task for everyone today - ask a friend if there is something you can do for them?

Elissa

Yesterday I attended an Autism Workshop with Donna Williams and I have to say it was fantastic.  Donna had many wonderful ideas and strategies on dealing with different aspects of autism, addressing issues and problems in a way that I had never really heard before.  Her thoughts and ideas were so practical and user friendly, to the point where I was able to come home and try out some new strategies straight away.

Donna talked about the ‘Fruit Salad Model’ of Autism.  She noted that whilst most people understand that every case of autism is different, people also need to realise that we can’t address or treat the difficulties of autism with a ‘one size fits all’ approach.

During the afternoon I took many notes (which I am now still making sense of, but will eventually be able to put into a format that is understandable) and really had my eyes opened to different ways of tackling problems.

Donna talked a lot about finding the right way to work with different personality types.  She explained that the degree of success you would have in working with a person with autism depended very much on whether you approached the person in a way that suited their personality.  I found this really interesting and immediately did a mental check on how I approached Jack (and instantly found ways where I might be able to improve in my approach).

I went to the workshop seeking help and ideas in an effort to try and improve what I did at home with Jack, and I definitely found some answers.  In fact more than just practical answers.

As any parent with a child who has autism would understand, it can be nightmarish facing the real world where there is often harsh judgement and a lack of understanding.  For myself, it is often an effort to ‘face the world’ and the safety of home is very comforting.  Donna made a statement very early on in her workshop, she said, “there are heaps of people like me - if I run away, what hope do they have?”  This statement gave me a wake up call.  It certainly won’t change what I face when I go out into the world with Jack (or make it any easier), but her words have at least given me a sense of needing to push on regardless.  One day Jack is going to have to face life without me, and I need to make sure I am modelling a sense of courage and worthiness to him - otherwise, what hope will he have?

Yesterday was an invaluable experience.  I think anything that helps us in our understanding of autism is a good thing!

PS - Donna’s website is worth having a look at!

Elissa