Autism Positive Parenting

5 Tips For Parents Beginning The Autism Journey

5 Tips For Parents beginning the Autism Journey!

I originally wrote this piece for my friend Tia over at BecominNeurotic and she published it in her Live Better series. Tia has given me permission to share it here as well!

My son is what most would consider a “late diagnosis”. He was not diagnosed with Autism until he was 5 and a half. He has a high functioning form of Autism known as Asperger’s Syndrome. For most, a diagnosis is a sad moment. For us, his diagnosis was a relief. We finally knew what was wrong and how to approach it. I have learned quite a bit in our four years, but there is always more to learn. I think the very beginning is the hardest part. So here are some tips for those of you that are just starting the Autism journey.

5 Tips For Parents beginning the Autism Journey!

Beginning The Autism Journey:

Tip #1: Don’t let the diagnosis defeat you.

Having a child with Autism is not the end of the road. You need to do what you have always done. You adapt to the situation. Yes, certain things will have to change, but now that you have a clue as to what you are dealing with, the changes are more readily known. Adapt, live, love.

Tip #2: Do not believe everything you read, hear and see.

I fell into this trap at first. I was given books, sent links to articles, listen to the stories from doctors and forums. Don’t do it. Just don’t. At least not right away. No child with Autism is like another, so all of the “advice” that people give you, is just going to scare you and stress you out at first. Nobody knows your child like you do and now, you have another layer to get to know.

Tip #3: Do start looking into programs that can help.

There are a lot of programs that can help children with Autism and their families. I’m talking about beyond the doctor. A lot of local play places will hold sensory nights for kids with special needs, there are wonderful OT groups, respite (help for parents) programs, PCA programs. There are grants and more available. The list grows everyday as the awareness does.

Tip #4: Prepare yourself for questions and judgmental stares.

I can’t even count how many times someone has asked me, “Are you sure your son has Autism?”. A lot of people fall into the cookie cutter trap. They think that if they have seen one Autistic child that they have seen them all. I get questioned all the time. It comes with the territory. I mainly get questioned by family and friends. If your child has a more severe diagnosis, you may get questioned by complete strangers. The judgemental stares happen daily. When my son shrieks in excitement because a store carries blenders. When we eat out and he has more food on his face and shirt than my 3 year old. When he can’t figure out if he should push or pull a door or how much force he needs to use. When I bend down and give him a stern warning, through gritted teeth, that he needs to knock it off. People stare. People judge. Just perfect your fake smile or, if you are like me, your major stink-eye!

Tip #5: Your child has Autism, but Autism doesn’t have to have your child.

Set expectations. Set goals. Set rules. Don’t let your child have unexpected behavior just because he has Autism. We refuse to let our son use Autism as an excuse. Yes, we know it can make things harder for him, but we know he can achieve whatever he sets his mind to. I know that my son is capable of great things, so I am not going to let him surrender to his diagnosis.

Again, adapt, live and love, but don’t let it defeat you!

[Tweet “Adapt, live and love. That's what you do on the #autism journey!”]

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25 Comments

  1. Echo, thank you not only for sharing these great tips, but for also always being so open and honest about your family’s dealing with autism.

    1. I try to be open and positive because that is what is needed!

  2. Hi Echo,

    First I want to tell you that I had no idea I was on your site for a few minutes after the page opened because you changed your header but… I ABSOLUTELY LOVE IT!!! It looks so good and who wouldn’t love the whole Alice in Wonderland vibe you’ve got going on up there!

    Such fabulous advice for parents and family members that are new to the ASD’s. I couldn’t agree more with the last one Tip #5! I decided 10 years ago when I got the diagnosis that I would NOT treat my daughter any different than I do her sister and that I would NOT allow anyone else to either. She is NOT allowed to use her diagnosis as an excuse and I don’t talk about it too much because I don’t want her to think that it’s a crutch of some sort. She has always been in a regular classroom although there has been a lot of bullying in her life she does fairly well with the IEP we have in place. I was a single Mom the majority of her life so I wasn’t able to home school her I had to work and so many times I wished I could have home schooled her but don’t think either of us would have survived that if I’m being honest! lol

    The stares and people questioning whether that is what my daughter really has is so annoying! I have heard so many times, “It’s so hard to believe that is what is wrong with her… She looks so normal!” OMG! I have totally lost it over that statement on more than one occasion! When she is having her “bad moments” and totally freaking out in a melt down and I’m talking through clenched teeth like you described we get tons of looks but like you I have perfected the stink eye and I have a big mouth which isn’t always a good thing!

    Anyway, thanks for sharing and I wanted to share some of my story with you so you didn’t feel completely alone in it all! Your son is so very lucky to have you as his Mom not all parents of children with an ASD are as strong, brave, and loving as you seem to be! Thanks for linking up to the #BigTopBlogParty and I hope you have a fabulous week!

    Much love always,
    Lysa xx

    1. Thank you so much, Lysa! I am glad you like the new look.

      I also want to thank you for sharing part of your story! It means so much to me!

      1. Hi Echo,

        Thank you and you’re welcome! I’m glad that it meant a lot to you! Hope you are having a nice morning so far. When I woke up the first thing I thought of was how I was jealous of you and wished I had my coffee pot on my nightstand! Hahaha! I seriously think I’ll be stealing that idea in the very near future! 😉

        Much love always,
        Lysa xx

  3. Thank you for sharing tips that will contribute to so many, Echo. My nephew was recently diagnosed, and we are all learning- this helps! I’m glad you shared it with us at Treasure Box Tuesday- I will pin so more people can find it.

    1. Thank you for your comment, Joy and I know a new diagnosis can be scary, so I am glad that you are open and learning. I do hope these tips help a few people.

  4. That’s incredible insight. I know the journey is different for all, but I always admire yours. The homeschooling and the learning to understand him better. I think it makes for a closer family, and I know high functioning is a part of that, but all of it is so important.

    1. Everything we do does make us closer as a family and yes, every kid is different, especially kids with autism. I think that is one of the things that needs to be realized the most!

  5. Your tips couldn’t be any more spot on Echo! #2 was definitely the hardest for me because I am a researcher 🙂 I research everything, probably more than I should lol. But you’re absolutely right, no one knows your child like you do and getting an Autism diagnosis, while not the end of the world, is definitely a learning curve. It takes some time but eventually, you’ll figure out what works for you.

    1. I like to look things up too and that made everything so much scarier! I wish I would have known that in the beginning, LOL!

  6. Thank you so much for these tips! I am pushing for an evaluation for my daughter-not ASD, but writing difficulties. In some ways I am dreading the process and the possibility of a diagnosis, but on the other hand, I’d like to know what’s going on in her head. Answers would be nice!

    1. I know how you feel. Diagnosis can be so scary, but it can be so helpful too!

  7. Lisa Ehrman says:

    I love your post, especially how you tell parents that they know their own child best. In this way, you’ve really kept such a positive attitude and kept your child first (not some child you read about in a book). What a great mom!
    Thanks for sharing at Together on Tuesdays – I know you’re helping other moms and dads out there!

    1. Thanks Lisa! I think sometimes, we get so lost in what all of the professionals say that we forget how well we know our kids!

  8. JK Wardell says:

    Thanks so much for this.. our oldest who is 8 has a spectrum (i use this word because like you have said I too believe each child is different and has their own different level) of autism/aspergers her doc has recognized it but not completely because he wants to see if “she will grow out of it” he is also believing it is something she will just grow out of. for us we know that isn’t true because since till now we haven’t tried figuring out ways to work with her it has gotten worse.

    I really like #2 and with #4 we get it all the time. for us it is people exp. family that question it some say she is being a brat and others say no she doesn’t have it because she is so smart. the latter is what makes me think when did a child with autism make people think they are stupid, even those with down syndrome in my opinion are smarter then we are just lack the ability to show it like us. Anyways back to the point lol i can’t believe the amount of people with that mindset that autism/asperger children/people are at a lower IQ. our daughter is very smart but like you said the push/pull concept takes her a bit to realize unless we tell her, there was one time she even read that she was to pull but still pushed. our bigger things and this is something people dont realize so a melt down happens then they call her a brat instead of handling it different… but she takes things literally she doesn’t understand sarcasm, sayings, or emotions (at first even though people say she does but is just being rude sigh).

    it has been a major learning experience and I have had to learn patience with her and during the melt downs which at times have learned I just need to walk away and let her have her moment, until I learn a better way. in public I have learned the gritted teeth method lol and the what i like to call do u have a problem look to others that give me the look of control that kid lol. there was one time i had a mom tell me i handled it good as she recognized the situation since her son has aspergers but a more sever case and knew what i was going through.

    thanks for the tips and post

    #‎BigTopBlogParty‬!

    1. I know exactly where you are coming from. I have been there and believe it or not, still deal with it regularly. You learn to grow a pretty thick skin.

  9. I found you via Small Victories Sunday and so happy I did. My 20 year old son has Asperger’s, and I can totally relate to EVERYTHING you said! Thanks for sharing this simple tips, I think it is sooo easy to be overwhelmed, and to get freaked out. L I would love for you to share this great post with us at Party in Your PJs, my weekly link party, I am sure that there are others that would enjoy it as much as I did.
    http://www.thecookiepuzzle.com/2015/04/party-in-your-pjs-53.html

    1. Thank you so much! I would love to come share it, so hopefully it can help someone else because it is too easy to get freaked out and overwhelmed!

  10. What glorious timing!

    I’m so glad to have found this post (via the Mommy Monday Blog Hop). I went through your blog and read some of your other posts on Autism as well.

    We don’t have a diagnosis yet. My 5 year old has spent a year in OT for “sensory issues” and motor delays. Well, now we’re on the road to seeing if there’s more to our little Bug. We’ve completed some preliminary stuff with a child psychologist, the GARS-3 and BASC (waiting on results), and she has some other evals to do before we get anywhere.

    We are definitely feeling that a diagnosis at this point will just be a huge relief because we’ll have some direction.

    It was great to read this tonight! I’m going to go find you on Facebook. 🙂

  11. These are great tips. My kids don’t have autism but I think these are valuable in applying to many situations. I have been judged so many times over my parenting and life decisions. But not one of them has been in my shoes. Every one of these applies to my life dealing with chronic illness. I don’t mean to change the subject to myself but just saying this to show that your tips are valuable in more ways than you might realize. Thanks for sharing with Small Victories Sunday linkup. I received a very appreciative email about your Love, Hate and Autism post, thanks for being a voice for autism and helping parents and readers understand autism’s complexity.

  12. After years of knowing our son was very ‘different’ than other children, he was finally diagnosed with Aspergers at the age of 17. His life would have been so much easier if he had been diagnosed at a younger age, but looking on the bright side we have always encouraged him to try things, whilst also being aware of his capabilities as a person (even without an official diagnosis we knew).

    It was a total relief to be told he has Aspergers (in a strange sort of way) and people often don’t realise that there is such a thing as high functioning autism.

    A post I found interesting to read as it’s close to my heart.

  13. What to do when no one believes you that something is wrong? Our daughter is nine and when have spent the last seven years, thousands of dollars, and countless trips to different doctors. The most we have gotten in from her new PC Pedi that she has a social phobia. Everyone says she is too social. She doesn’t understand sarcasm, she has one friend that she has retained for the past three years and from what I have observed that is because the friend talks enough for both of them and rarely expects a response she just like to talk. She is unable to hold a phone conversation. I learned from her classmates, not even the teacher, that she walks around with the headphones for her Chromebook on for half the day (she tells me because the class is too loud. She loves to collect things like blind bag packages, paper, and things out of our recycling bin, but outside of that we have been unable to figure out any other real interests that she has. When we ask her what she likes she tells us things that we know her sisters like, but nothing that is really her own.
    In school, she seems to be very smart, once you find the method of learning that works for her. Finding that method has been very difficult though. Assessments are very difficult for her because she runs on her own time. For example, I know that she is great a math, but we do flashcards and there is always a delay in her answer, she can never give that snap answer.
    She interacts well with adults, and I feel that makes evaluating her very difficult as she is completely different with psychologists then she is with her peers. My husband is the same way with his peers. He feels that he has trained himself with scripting and such because he knows what is expected of him in society. The pretending comes at a great cost though, if he is out of the house for more than a couple hours at dinner or another gathering he become stressed, irritable, and cranky. He uses alcohol to relax after work and social outings. His father is the same way. I have tried asking the psychologists, “Let’s pretend she has a high functioning autism or Asperger’s, what can I do for her then?” Just to find tools and all they say is, “We don’t believe she has this.” Always because she is too social. I am at my wit’s end. I don’t want her to end up using alcohol or drugs as a crutch because she doesn’t have to tools to cope, and I know that I unfairly ask her older sister to be a “bridge” for her when I comes to socializing at school. What can I do?

    Thank you!

    I found this article that provides great information that seems to relate to my situation but I’m not sure where to go from here medically.
    http://www.npr.org/sections/health-shots/2017/07/31/539123377/social-camouflage-may-lead-to-underdiagnosis-of-autism-in-girls

    1. You know your child better than anyone! Continue to push for assessments and diagnosis! Try going somewhere that specializes in autism. My son is extremely verbal and social, but is also autistic.

      1. I live in the Omaha/Council Bluffs area. We went to the Monroe-Meyer Institute at the University of Nebraska, which is suppose to be great for such things, but I didn’t think their evaluation process was great. How would I go about finding someplace more specialized? Is there a website? What things should I be looking for them to be doing in a good evaluation? So far they have only talked with her and had her do a story board, which they said she did great with, but I knew she got the story from a movie she had seen recently.

        Thank you!

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