Getting a diagnosis of Autistic either for you or a loved one can be a traumatic experience.  Check out our previous blog on the subject (https://patienttalk.org/?p=284) which in fact was one of the first posts we ran on the blog.

In this blog we are interested in kick starting a discussion on how to discuss autism with family, friends and even the wider community.  While we are  not aware that autism is perceived in a negative fashion (see https://patienttalk.org/?p=1668) we are interested in the best ways of getting a positive reaction to an autism diagnosis.   The aim is to make the comments box below a great resource for anyone who has themselves just been diagnosed with autism or has a family member or friend who has just received a diagnosis.

As I mentioned before I found my son’s initial diagnosis very hard and, at the time, did not want to discuss it with anyone in any depth.  I now feel that this was a mistake as along the way we did lose contact with people due, in part, to us not explaining the changes in our lives caused by our son’s autism.  (To be honest most people assume that a five year old who can’t use a potty must be on the receiving end of bad parenting.)

One thing I have noticed is that a lot of people assume that people on the spectrum are savants rather like the Dustin Hoffman’s character in Rain Man.  Not easy to disabuse people of this one I’m sorry to say.

But the real headache, for me, is the meltdowns.  As the years go on they become fewer and fewer, for us at least, but when they do appear they are still an emotional tsunami.   For the onlooker it seems these are just “tantrums” over nothing rather than an upturned world which our son cannot control or rectify.  But the whole experience is made much worse by the looks of contempt and disgust on the faces of passers-by when it happens in public.

So how do you talk to people about it and try to get them to understand?

I know some people walk away from massive social lives finding it easier to just focus on their loved ones.  Others turn to autism advocacy often with great success.

So over to you.  How do you communicate autism awareness and the specific issues which affect your life to those around you and in the wider neurotypical community?  It would be great if you could use the comments boxes below to share your thoughts on these matters.

You might wish to consider the following questions when framing your answers:-

a)      What are the major issues with regard to autism which you feel you need to explain to others?

b)      How has the autism diagnosis affected your relations with friends and family?

c)       How do you explain autism to others?

d)      Are they any resources you think may be of use to others in helping them raising autism awareness?  This might include your own autism awareness resource.

e)      How do you explain meltdowns to those around you?

Please note that these are only a few of the questions the subject raises.  Please do add anything you think may be of interest.

Many thanks in advance.

 

LynetteConstable	JolandaKruithof Looks like it has some great information. Can you translate it to English? I can’t read Dutch. I’m sorry. But I need help explaining my son’s behaviour to his grandfather – who just thinks he is a “miserable sod”
DarvinMcCloud	Do we have any data concerning autism and hydrobaric treatment? Shouldn’t we give it a good test, if not why?
JolandaKruithof	I am a dutch mom of a 9 year old Aspie. He’s got diagnosed december ’13. Because I want my friends, family and everyone else to know what it does to us and the impact it has on our lives, I decided to go blog about it. You can find my blog at: http://aylablogt.blogspot.nl/. Hope you enjoy!
misser31	My 8 year old daughter Dakotah was diagnosed with autism @ 18 months, she has been in early intervention since then. On some things she has improved on and others she needs more help, she is a strong independent little girl who is teaching us that being different is not as common as we think anymore and they are 10x smarter then us. This year has had struggles and triumphs, she now knows how to spell her whole name and is reading a lot more. We love her more than anything and am so glad she is in our family. Love you Dakotah bear!
JulieCamacho	Although my son is not recently diagnosed he has started to have meltdowns at his Pathfinder events (club for kids 10-15 yrs of age). He had one almost 3 weeks ago and had a hard time 2 weeks ago at a large event.  Then hospitalized last week from school due to a large meltdown. These events have been hard on his friends in the club and Saturday he missed the club meeting. The kids had lots of questions for the directors who decided to ask me to speak to them about what was going on with my son. I told them to look up Autism online that there are different areas people are affected in. Juans biggest area of difficulty is his social skills. I told them to also look up famous people with Autism so that they can see how people can be successful with this diagnosis. One child asked if this was a disability, my response was that this gave Juan different Abilities. They liked that comment and then we went over the positive things  Juan has to offer and some of the things like teasing that he struggles with and how they can help him if they notice little signs of fustration for him. They were all intent on listening and very involved with question. I am hoping that this will help understand him a little better and make a difference in him keeping more friends.
knutegems	I would suggest you keep things simple. Any parent of an autistic child is under enough stress. Simply state that due to your child’s autism you are dealing with certain behavior issues. Most of these behaviors will change or lesson with age. There are many sources of information for people who are interested. I always felt it more important to educate the children my son was going to be with and help them to understand. They only know what they are told. If they are informed correctly they will have great understanding and be very accepting.
Amanda Rich	A) The melt downs…I want one of those bubbles floating above her head to say “I am not a spoiled brat, I am over sensitive and something just pushed me over the edge of my thresholds….please don’t roll your eyes at my Momma” (B) and (C)…our friend base has changed, if they are willing to hear us out and learn they are still our friends…some decided that their kids would “learn bad habits” (ugh) from her. Mostly I miss being able to relax, I am never not aware of her voice, her body language (that warns us that she is about DONE). I try to read everything I can, always looking for support. My biggest struggle….she looks like any typical child, she isn’t typical- she is 9 and will throw herself on the ground, ears covered, tears flowing and screaming. It is so hard when nothing looks “off” outwardly….I so thankful she is as high on the spectrum as she is, but it makes a barrier to the uneducated….I see the looks, I see the eye rolls, she is obvlious to the social cues, the social intuition is not there, she has speech deficits, and her heart is as big if not bigger than the universe. She is my Angel and I just hope that education for the public continues, if the judgemental could just walk in my shoes for a day! Thanks
JoannaPapadopoulou	I am a mother of a 3 yr and 8 month old big diagnosed with autism at the age of 2 1/2. I will try to address each one of your questions in order to assist your cause. a) I usually need to explain that my son refuses to eat any type of food besides sweets, unless it is served blended in a bottle. Also I need to explained that he has not mastered using the potty just yet and also that he will not reply verbally or look at you often when you are talking to him. b) we usually avoid gatherings when they take place at restaurants or coffee shops. We prefer house gatherings and some play grounds. Also for a long time we did not feel like inviting ppl over our house like we used to. Now we are better with that. c) I try to give basic characteristics that mostly involve my son. I usually describe it as a different way of seeing things, difficulty in communication, lack of sicialzation skills, difficulty dealing with changes and so on. d) I riled mostly on th Internet and on books about autism, Various treatment approaches like ABA, also I find others parents advice and experiences helpful and more practical. e) I usually explain to ppl what triggered the meltdown, for ex that he wanted the chocolate and I didn’t give it to him, or that he is tired and he overreacts to situations. Thank for reading this. I will be happy to discuss the issue more with you.