The endless summer is over. It’s back to school and schedules. Nature puts on its glorious color in a grand finale, then begins to fall and pile up to mulch against fences and hedgerows. Everywhere, the crisp air announces the changing of the seasons.
First, fall. And then, winter.
It’s the time to ease into routine once more. The world straightens it’s shoulders, and faces forward. This new season is actually welcomed by people on the ASD journey. The looseness of summer scheduling is hard for most on the spectrum. They much prefer to know what’s planned, what will happen, and how it will happen. Routine is their friend.
It is best for someone on the autism spectrum not to be forced into a lot of change, or at least, any quick change. Changes should be planned well in advance of the event, if at all possible, with drills and practice runs of what will be happening. Easing into change is the best case scenario.
Which makes me think of things I have learned to make easing so much easier. When I read this post I began to feel that perhaps we are on the right track. The writer of this blog, Anna, reveals her first hand experience that corroborates what I’ve been thinking, and her input gives me confidence. The ASD journey can be very confusing, and there is no official roadmap. Living with autism is a continual quest for direction with no guarantees that you’ll end up at the place you were headed for. But by constantly adjusting the endpoints, you can arrive at a great place.
Ten Tips to Ease The ASD Journey
- A hard thing with autism is eye contact. Don’t force eye contact. There are so many people who just can’t understand this, and even my daughter’s doctor tells her to practice eye contact as much as possible. He is supposed to understand. He is supposed to be helping her understand why she can do eye contact sometimes, but that it’s okay not to force it. It is so much better to keep the eyes in a safe place, and make a quick but respectful exit, if necessary. In all the doctors we have seen, not one has ever had sympathy for how she feels. They all want to tell her how she should feel, and how she should try to feel. If you want medical opinions on this aspect, read this. For a more people-friendly explanation, this might help more.
- Emotions and feelings are so hard to interpret. Don’t take everything the person with ASD says the way it sounds, and certainly don’t take anything that is said personal. It may be meant personal, and hurtful things often come from a person who lives with anxiety as a constant, but do not take it personal. Always give room for the emotion and impulse of a moment that may change quickly.
- Listen with your heart, and not just your ears. Be cool and analytical in conversation, and never return fire with fire. Wait until the storm is over to discover what was really going on, or at least, ask questions that may help you understand. It very likely has nothing to do with what was being said, or what you thought was going on. It is probably a reaction to something she is dealing with that she hasn’t yet figured out how to talk about, or hasn’t had the time to work through. This poem describes perfectly some of the reasons reactions are unexpected (Written by Anonymously Autistic):
Squinting in the light
The world is so bright
Shiny daylight fixtures
Killing me slowly
Eyes and brain aching
I’m not faking
Sounds you can’t hear
Driving me crazy
Can’t tune it out
Can’t make it stop
I close my eyes and rock
Counting to ten
Trying to hold it in
Looking for a place to hide
The world is spinning
I can’t escape
Hot tears burst
My body burns
Nobody can help me
Let me be
Do not touch me
I need to breathe
This pain must run its course
Before I sleep
- Try not to put her on the spot, or require answers to questions quickly. Be patient. Wait for the right time. Don’t push for fast promises or decisions. Plant the seed, then wait for it to grow. Tomorrow or next week the topic may come up again, and a satisfactory conclusion made.
- This next one is hard to describe. Your behavior is what matters, and your actions, facial expression and body language are what counts. She cannot sense what is in your heart, because she can’t read faces or understand sarcasm. She takes things at face value, so it is important to squash any emotions you feel about something else before you address her. Explain carefully that what you look like and how you feel right now does not have anything to do with her. I can’t stress this enough. She will not know that your emotions and reactions are not meant towards her, and even after many times of explaining to her, her head will get it, but her heart won’t. So be careful, and always be kind. Even when she can’t return that kindness.
- Don’t force her to have a social life, because chances are she feels its absence very keenly. Her neurotypical peers are doing many things she isn’t, and if she feels forced into social life, she is headed for hurt. She will think she is doing what the others are doing, but she will be taken advantage of and then ignored. She will be left to agonize, and wonder what she did wrong. Encourage her to have one or two friends, and not necessarily from her peer group. Someone younger or older may fit the friendship ticket better than a peer, who can only talk about doing things she wishes she could do successfully.
- Approve, praise, and under-gird fragile emotions. Make a list of ways to make her life better, and read it often. Remind yourself of what works, and things you’ve discovered that don’t work.
- If you can’t stay on top of this pinnacle (and you won’t) take a break to refresh, before you engage in communication. It is too easy to break down what took time to build up, so do the best thing for both of you. Take breaks, because you have to stay on top of it. No whining allowed.
- Encourage volunteering, if she isn’t successfully holding a job. Kim spends hours helping Miss Anita, the equine-therapist where she learned to ride. Kim doesn’t like to ride that much, but she loves helping lead and saddle the horses for the young riders, leaving Miss Anita to instruct.
- When her comparison virus sets in, and volunteering isn’t enough, encourage her to find a job. Searching for a job and researching the options will help cure the virus, because she will probably decide that volunteering does work so much better. Don’t demand she have a job, if you know it will set her up for overwhelm and eventual fail. Do encourage her, however, to slowly work towards that goal. Assure her that when the time is right, she will find the job of her dreams.
Find the Great in the ASD Journey
You may be asking what is great in this scenario, but believe me, there are good things to anticipate.
You may feel that you are lowering the bar compared to your other children, but you aren’t. They are not the same people, and each person deserves to have their own bar.
I realize having said this, that there are times to encourage and work toward a higher zone. This applies when the capability and the right timing for the child is there, and not just your desire.
So the Great Thing is finding joy in her comfort zone, without anticipating more than today. Because her key to joy is believing she’s enough for you.
Find YOUR joy in believing your lives are perfect TODAY, and Tomorrow will be better than today!
Have you struggled with something that makes it difficult to accept your TODAY? Please share your tips, and tell us what you have discovered for easing your journey.