Sunday, April 3, 2011

19 Do's & Don'ts for Helping An Individual or Family Dealing with Autism / Aspergers

Hello Aspierations Blog Buddies,

Today is Day 3 of my 30 day commitment to blog each day during Autism Awareness month.

My commitment to promoting acceptance, empowerment, education and support to those on the autism spectrum and the passengers riding shotgun does not end on April 30th.  My commitment is lifelong because autism isn't just going to disappear and go away.  Autism is a part of my sons' makeup and it is a part of my own. 

I was pleasantly surprised to see the number of comments on my last blog, World Autism Awareness Day 2011 - What does this day really mean? and also on some of my prior postings.  As of now, I think I'm caught up on all of my responses however if I missed someone, please drop me a line because I want to acknowledge and respond to everyone who has taken time from their own busy lives to read my blog and share their own opinions.  

Yesterday I wrote that today's blog was going to be a list of Do's and Don'ts about how you can make a difference helping someone living with autism including Asperger's Syndrome or an autism spectrum disorder.  I'm going to broaden that to include suggestions on how to help the immediate family members as well.  

For purposes of this discussion, I use autism as an umbrella term encompassing a wide spectrum of disorders including Pervasive Developmental Disorders (PDDs) and Autism Spectrum Disorders (ASDs) including Asperger's.  Also when I refer to "child" when talking to parents, I mean a daughter or son of any age whether that be a toddler or an adult.  

So here we go... 

Hmmm...

I sense a false start.  

The truth is I want to preface my list by saying that the suggestions I'm going to give below are not all-inclusive nor are they necessarily all applicable.  They are the opening to a discussion that I hope others out there will want to contribute to.

During Autism Awareness month, it's not just making other people aware about what autism is, but it it is also making them aware of what they can do to show acceptance, encouragement and support.  So with that, I'll start again.

These are in no particular order of importance.

#1) DO educate yourself and if you're a parent or caregiver, DO try to become as knowledgeable as you can about all aspects of autism. There is a LOT of information out there, some reputable, some not so much so keep an open mind, take notes, bookmark websites and blogs.  You do NOT need to get through it all in one night, one week or one month.  Your education will be an ongoing, lifelong process.

#2) DO understand that life with autism is a lifelong marathon, it is not a 100 yard dash. Although in our experience, early intervention provided key benefits to helping our youngest son, if a diagnosis did not come to you or your child until later in life, do NOT beat yourself up.  I lived for over 40 years of my life having no clue I was on the spectrum and although I'm sure in retrospect, having certain treatments may have helped with certain co-conditions, you can't change the past.  You can change the present and you can make a positive difference for the future.

#3) DO understand that there is a grieving process when one learns that a loved one has received an autism diagnosis and that it can have many waves or cycles over your lifetime.  Expect to have to work through shock, sadness, anger and acceptance. (Acceptance doesn't mean complacency or that you are not an advocate.)  Here are a couple of articles that may help you cope with the grief:



#4) DO try to be patient in tribulation and rejoice in hope for your child, your family and yourself. This is not always easy but if you are a spiritual person or consider yourself a person of faith who believes in God, you will hopefully find that when you rejoice in hope, you are renewed day by day. 

#5) When offering to help a family who has a child/ren with autism, please frame your offering with words of love and DO listen to how that family would like your help.  It's going to be different for everyone, however I would venture from my own experience, that families are not looking for your pity. They are looking for respect, they are looking for dignity, they are looking for unconditional acceptance and they are not looking to be judged.  It is okay to be sympathetic, it is fantastic to be empathetic but it can be horribly damaging to be apathetic or conditional with your support.

#6) DO be patient, understanding, loving, adaptable and forgiving with your children and yourselves. We are all fallible. Learn what comforts your loved one and what is bothersome. We all have meltdowns in one form or another.  Those of us on the autism spectrum have them more than others as we often go through sensory overload that is very difficult to process.  Learn about this. Through education comes greater understanding and a better set of life skills and coping skills for you and for you to share with those you care about.

#7) Do NOT be slothful (think Jabba the Hutt or if you're a UCSC alum like me, a banana slug) in your attitude toward helping your child or loved one live a happy and fulfilled life. Laziness, indolence, apathy... whatever you want to call it is not what your loved one on the autism spectrum needs. However don't confuse slothfulness in yourself, a relative or friend with depression.  Depression needs to be treated and many on the autism spectrum have depression or the tendency toward it as a co-condition.  

#8) DO be fervent in your spirit and attitude. You may find your light shining brightest when you are selflessly making a positive difference in the life of someone else. 

#9) DO try to build a support network around yourself and your child.  Depending on the age of your child, this could include family, friends, teachers, medical professionals and therapists, caregivers, pastors or counselors. 

If you are on the autism spectrum yourself and you have challenges with social situations and discourse, this might seem like a scary or insurmountable task but it's important to try not to isolate yourself.  If you don't have family or friends you are in a position to turn to (or even if you do) for emotional support, there are a lot of online support groups on Facebook and throughout the web where you can post anonymously. If you need suggestions on where to do that, just post anonymously in the comments section or drop me a line at lettingmylightshine@gmail.com.

#10) DO be responsible and accountable to your children and to yourself.  

#11) DO try and find balance. Cling to what is good, beneficial and helpful. 

#12) DON'T beat yourself up if someone you hoped would show support appears self-righteous, ignorant, apathetic or might not yet have the skill set or life experience to be able to provide you what you hoped they could or would.  Do wish them well, keep the door open, offer educational materials about autism and be willing to share about your children. Do try and show them honor and respect and take the high road. By keeping the door open, it will cause a lot less stress in the long run.  

#13) DO let your love for your child and yourself be genuine and authentic. Don't dwell in pretense or hypocrisy. Your children need your strength and they need your grace.

#14) DO journal your feelings if you think writing may be therapeutic for you.  Give it a try. No-one has to see what you write so don't feel embarrassed.  Do it for you... 

#15) DO give and contribute... and realize that every person in this world has positive contributions to make. Help someone with autism find his / her gifts and encourage and support those!

#16) DO contemplate that there is unity in diversity.  By embracing those with neurological diversity and variances and helping them on the path to leading happy, fulfilled lives, we are practicing acceptance and showing love. 

#17) DO be humble. When you're humble and you stumble, you're less likely to grumble. (<--- my shout out to Dr. Seuss.)

#18) DO be your child's advocate and make sure to be involved with your children's IEPs (Individualized Education Plans) from the very beginning. Attend every meeting you can. Be proactive and don't wait until your scheduled meeting time comes up. Meet your child's teachers as soon as possible in the school year and pledge to stay in touch via email, phone calls, quick journal notes or whatever system works best for your situation. DO see yourself as part of a team with you as the biggest advocate.  Do NOT let yourself get run over in meetings. Stand up for your child.  Educate yourself and be prepared in advance so you know what to expect. Don't be afraid to meet with teachers and call an IEP meeting again if things aren't working but don't be an adversary.  Be proactive and not reactive.

#19) DO keep a sense of humor. You're going to need it!  Laughter is good medicine and who doesn't like some good happy endorphins to help lift the pain?

Well... that is a start... and by a start, I mean the beginning of just a few thoughts that came to my head when I pondered what I might be able to say to those looking to help someone with autism.  I could go on all night, all week, all month but now it's your turn.

As I said, the list wasn't all-inclusive nor was it all going to be necessarily applicable, however I hope you found something that you read to be of use to you and your personal situation.  Feel free to share a link to this blog if you know someone who might benefit.

Now it's your turn to contribute. What would you say if someone came up to you looking for advice on how to help your son, your daughter, your family, your student, your patient or your friend or family member with autism?  

I truly look forward to hearing what you have to say in the comments section!  Feel free to be anonymous or let the world know who you are.  It's all good with me!

Letting my Light Shine tonight.... 
How about you?

Hope, love and acceptance to you!
Karen

2 comments:

  1. When I first started reading this I thought it was going to be a standard tips list I've read many times before and although those have their place, what you wrote spoke to the inside. It was like hearing from a friend and not some person with a sterile tone who is dialing it in. You write with passion and inspire me to kick butt, end the pity party and be a better mother for my children. Hope you don't mind me reposting. I know a lot of other mothers, fathers and my own who should see this.

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  2. Hi Anonymous,
    Thanks so much for your nice comment! I missed it when you originally wrote but wanted to thank you now for your feedback. Yes, please feel free to repost this... tweet, Facebook, blog... wherever you feel it will do the most good!

    I hope you will stop by again!
    Best wishes,
    Karen

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