You are part of a unique group who may not quite fit in with the traditional autism community.
You may even feel guilty for using the term “autism” when your child is far from “Rain Man.” You may feel like you don’t deserve to use that term when others are far worse off and your child is verbal and may not even need an aide at school.
But your child with high functioning autism has challenges. Plenty of them. Challenges that very much affect him/her and your entire family. They may not always be obvious to everyone around you. But when they are? It’s very apparent.
And you wonder, secretly in your heart, if your child will ever grow up to become a productive, functioning member of society. And you also secretly feel guilty for even considering those thoughts because a mom, shouldn’t you be his biggest cheerleader?
You may hate using the term “autistic” when describing your child because you don’t want it to define who she is. Yet it is part of who she is.
Even though you’ve learned to embrace “autism” because it’s brought answers and help to your child, it’s never easy admitting he is “less than perfect” in society’s eyes. And every time you have to explain to someone, your heart breaks a little.
You might secretly feel guilty that your daughter is autistic. You know there is no blame, especially on yourself, but, as a mom, it’s hard to not have regrets.
Life is always unexpected, but with autistic kids, there’s an additional wrench thrown in the mix. Your child might change overnight and it’s up to you to figure out what’s going on with him. And it’s up to you to figure out a way to help him.
Yes, there are experts and doctors who can advise you. But it’s your job to help your child. You must be an advocate for him in a world that doesn’t make it easy. It’s a scary responsibility.
Everyone has an opinion, even those who have no right to say anything about autism. There are about 4 million results if you google “high functioning autism.” It’s up to you to weed through all the “noise” and figure out what will help your child.
You won’t be perfect, that’s a guarantee. But it’s hard to not try to make it perfect when it’s your child at stake. And then to not feel guilty when something fails.
Your child may be in therapy. Your child may be on medication. Your child may be on a natural supplement regimen and have dietary restrictions. There are so many options you might be doing with your child, and often times, you use a combination.
People don’t realize just how gut-wrenching it is to put your child on medication. They judge and say “Oh you went the ‘easy’ route.” But that is the farthest thing from the truth.
They have no idea how much you agonized about putting your son on meds. How you watched him struggle so and it just broke your heart that other things weren’t helping. How medication was a last resort, but you had to do something to help.
So you finally agreed to meds, but the battle wasn’t over. The right medication had to be found. That required you making careful lists of symptoms to report back to the doctor and many trials and errors. There were dosage changes. And side effects. Even now, you aren’t 100% certain this is the right med for your child, because very rarely is there a magic pill that people seem to think exists.
Medication is not the easy route.
Or you may have chosen a natural route. This might involve supplements your child needs to take daily (something he isn’t very fond of, creating yet another daily challenge). And there may be diet changes, perhaps a gluten free, dairy free diet, which is a lot of work, time-consuming, and expensive.
There are some days when you just want to quit.
But you love your child so much and would do just about anything for him or her. You so badly want your child to succeed in life!
You worry that you aren’t doing enough. But you can barely handle what you are already doing.
Your heart breaks for him when he is struggling and you rejoice when he has a victory. You inwardly cry with her when she is teased or rejected by other children (and also fume and make all sorts of inward threats to the “evil” child who hurt your own). And you are beyond thrilled when you finally see him making a friend.
People take for granted things that amaze you. When your child acknowledges your feelings or volunteers a hug, you find yourself giddy with joy!
It can be very lonely to have a child with autism. You can’t just go on a playdate with another mom and her children because you don’t know what your child will do. And while unfortunately there are more children diagnosed with autism today than ever before, you don’t have the connections everyone seems to think you have with the autistic community. You don’t have access to support from other moms who understand.
No, you often feel very very alone.
Sometimes you catch yourself watching other kids your child’s age and secretly wish your child was like them. Then you feel bad for even thinking that and quickly remind yourself just how much you love your child.
People don’t realize just how amazing your autistic child can be. She may have incredible talents and have so much to offer; she just does things differently than others. And while your heart loves to see that talent, you also ache because you wish other people could see and get to know who your child really is.
You forget to take care of yourself in the midst of caring for your child and the rest of your family. Yet you must not! You are so important to your child and her well-being and that’s even more reason for you to let go regularly and do something for you! But how do you fit yet one more thing into your already overwhelmed life?
Most of all, you love your child with a fiercely protective mother-bear nature that takes on a new meaning when your child has high functioning autism.
Dear Mom who has a child with high functioning autism.
I get it. My 12-year-old son, Nathan, was diagnosed with high functioning autism 2 years ago.
Every one of the things I’ve mentioned here has been true for me.
My heart goes out to you. It’s not easy. But You. Are. Not. Alone.
For even more support, check out my email list!
Anne says
Great message! I can only imagine how alone it must feel sometimes to struggle with these issues in a child, and it is good to acknowledge these feelings instead of ignoring them.
Erika says
Thanks, Anne.
Nick says
Hi Erika, I tried to find a way to respond to you directly or privately, and separate from another comment, but didn’t figure it out.
I can’t find any articles like yours for dads. It is rare that I see the words “autism dad” anywhere at all. Finding support as a father is tough because you have to have appropriate boundaries with women, and as a single parent of two on the spectrum, even the church doesn’t say “dad” when referring to single parents, etc. And don’t get me started on trying to have relationships work out.
I don’t mean to be negative. I stumbled across your article as I’m looking for articles that might help my current girlfriend understand that all she can do is empathize and support me. Most of the time, solutions or observations offered by those who don’t understand just end up being hurtful. I decided it is best that I stay alone, but then she came along and I love her.
If you know of any articles or books for a woman who is dating, and considering marrying, a man with two young adult sons with high functioning autism, I’d appreciate it. I would rather she end it sooner than later. I can’t go through the cycle of trying to help someone understand and meet her needs when I’m already overwhelmed. Watching one more woman walk away is too much.
Thanks for taking the time to read this. If you’re not uncomfortable with it, please send any suggestions to camnick94@gmail.com.
Peace to you and your child
Steve says
Hi Nick,
So glad i stumbled on your comments, its true nothing, and its pretty much nothing is aimed or offered at single dads with austic children. I have a 5 yr old with High Functioning Autisum.
People say to you all the time “hes just a boy being a boy’ or ‘give him a good smack’ or “i dont think he has autism, its all made up to get money”. Honestly some people are so rude or just dont think before they speak and dont realise how hurtful their comments can be.
I to have a new partner and my son lives with me and her two kids who are 5 and 4 yrs old, some days its a nightmare as her two kids being young dont understand my son when he wants to hug them, or play a certain way with them and it can get violent sometimes between the two boys. Then my partner gets upset because my boy has hit her boy and hes crying etc. Dont get me wrong my partner is a great person and has a heart of gold, but times its very hard on all concerned.
Anyway, im just glad to stumble on your post and to read that someone else has the same issues as myself.
I hope everything works out for you, your partner and little boy 🙂
Tammy Gee says
Hi Nick. I have recently read a book written by a father about his and his daughters journey. It is called Aspertools by Harold Reitman.
Sue says
Thank you Tammy,
I am a grandmother with son who has primary care of his 11 yo daughter. They both live with me and husband. My granddaughter’s mother was diagnosed with mental illness in her teens. We believe she has Borderline Personality disorder, but lately I wonder if she was misdiagnosed and if she is an aspie, because we believe that’s what our granddaughter (daughter) has. It has been a difficult road getting anywhere with a diagnosis. My son took her to get an evaluation with the intention looking into HFA. She has most of the symptoms. She was diagnosed with ADD and ODD. My son was as told we no longer do evaluations for HFA, despite knowing from all the forms and questioners that that was what he was seeking. Oh…he also received a $700.00 bill (after insurance) that he didn’t expect. He has mediocre insurance, no financial help from the mother (who along with her other 3 children are and have
been taken care of by the state and ssi). Sorry, I feel I’m loosing focus in this post. My point is it difficult, frustrating, and infuriating a lot of the times to get the services he need just to get her evaluated let alone therapy afterwards. Feeling like you’re being judged and scrutinized because you’re a father raising a daughter is hard enough on top the everyday struggles dealing with a child with disabilities. I am going to order the book! Thanks again for sharing and to the fathers that shared their stories also.
Erika says
Big hugs, Sue. It can be a long, frustrating road. Hang in there. Your son and granddaughter are blessed to have you!
Sharon Pointer says
Sue I read your article and the blessing is that your granddaughter and son are blessed to have you. I am also a grandmother of a grandson who has high functioning autism. I took early retirement so that I could help my daughter. They too live with me. Your son has to keep being assertive to get services because there is a lot of them you just have to dig through websites . I wish you and your son the best. He will get through the hertiles because he has you.
Metoo says
My daughter is 21, is HF. She has a male brain. She is not trans. But my husband is. However he is not austic. There is however some connection there. We never knew our daughter had this till she was diagnosed around age 19. I’m a stage 4a cancer survivor. Some days I have much self pity but most of the time I’m just glad our family is in tact and loves each other.
HEATHER says
I can’t figure out how to comment on this article, but I want to say thank you.
It has been an up hill battle to get help for my son. Everything in the article is what I try to explain to or hide from others.
It’s nice to know I’m not alone.
Thank you again.
Erika says
Hugs, Heather! You are definitely not alone!
Jordan says
Hello Erika,
I am a mother to and 8 year old boy who I believe is high functioning autistic but cannot seem to find a place to get him diagnosed that doesn’t cost an arm and a leg. I am trying to get everything straighten up with his therapy and school as well but when the school did their ASD assessment they scored him as normal.
Can you please provide any resources for autism diagnosing?
Kelli P says
Hi Erica,
I am just now seeing this article on Pinterest and I just couldn’t believe what I was reading!! You literally write down EVERYTHING I feel on a daily basis! And you even wrote abt the awful Mom guilt!! For the first time since my son’s “official” ASD diagnosis, I read an article that truly applied to me & my son!! And just like your son, mine was diagnosed “late” in life too, he was 9 1/2 yo when CHOP FINALLY gave us the correct diagnosis. And that just infuriated me because i’d Been telling them since he was 5yo that it wasn’t just “ADHD” which is what he was diagnosed with for years. I finally made such a stink abt the fact that, NO, HE ISNT JUST ADHD!! that they finally agreed to another ADOS (he “passed” his 1st ADOS test when he was 4 1/2 yo, so they kept referring to that test!! He was finally give the ADOS again on Aug.28th, 2017 and then they FINALLY said, “oh yes, you’re right. He does have ASD.” And I was so relieved and angry at the same time- relieved & angry at myself because I was right & deep down, even though I KNEW, I still didn’t want to be right and so angry at CHOP that they wasted so many years that he SHOULD HAVE BEEN RECVG EARLY INTERVENTION, but wasn’t because he was misdiagnosed! Since Oct 2017, I’ve been going through the process of trying to get wrap-around services at home & school and because those agencies are so busy & short staffed, we still haven’t had ONE visit from our BHC and I’ve been told it’s going to be several more months before an MT becomes avail for us!! It is just so maddening, but I feel like you know & understand it because you’ve been there too! I can’t thank you enough for your article & for validating my feelings & emotions on this roller coaster.
Nocole says
My son is 12..I’ve known since he was a baby. I cru for him almost nightly.
K says
Thank you for speaking my mind
Donna Sylvester says
Thanks Erika . I am reading this post after hosting yet another family get together ( 30 people) my high functioning daughter won’t come out of her room ( except to eat and sing happy birthday) , I know they mean well but the comments of ( is she even here ? ) continue to hurt . They make think I need to ” do more” not knowing the endless daily struggles for hygenie , clothing that’s season appropriate and fits , meds , food & drink that dooesnt ” taste right “. Wearing pjs to bed
Susan says
Donna,
Your post spoke to me so strongly. We just got home from a family birthday dinner where my dad, who knows better, couldn’t help but ask my daughter why she was wearing a winter coat to dinner on a day when it’s 85 outside. And I watched her close. Like a flower, tentatively opening herself up only to have one comment send her back into her tight little shell. Hygiene, clothes that fit, helping her adjust to all the hormones that go along with 12 year olds (as if aspergers alone wasn’t kicking my tail), to just exhausting. How to help her grow into the amazing woman that I KNOW is in there is a full time job. I’m sorry that you have struggles too, but it sure did help my heart to know I’m not the only one tonight.
Susan
Mark A Johnson says
We have a 28 year old daughter who was never diagnosed with anything. But she would wear coats in the summer, and go out wearing a t-shirt in 40 degree weather. She also never fit in well with others at school. Super smart, but I always thought she was being rebellious. Now we’re raising her son, who has been diagnosed level 1 autistic. Again super smart, but got kicked out of pre-k for behavior issues. (That was before the diagnosis) I’ve begun to wonder if our daughter isn’t also autistic. She still has issues.
Amy Desrosiers says
What a beautiful post. My children do not have Autism, but my middle child has heart defects, and ADHD and it is hard accepting she is different in this world.
Erika says
Thank you, Amy. 🙂
Aubrey says
Very informativ. I have a cousin with autism, but I don’t know much about it. Great read.
Kelly Hutchinson says
Thank you for verbalizing what I have been feeling for so many years. My son is 14 and has Asperger’s and I have always felt guilty for using the term autism. So many people look at me, and have called me, a liar. I am forever grateful for this piece!
Erika says
Hugs, Kelly!
Shannon Ketchum says
Thanks for writing this and sharing it. I have a 20 year old step daughter with high functioning autism. She is sweet and kind and thoughtful and full of quirks. She’s in tune with everyone around her and is very sensitive to the feelings of others. She’s loyal and an amazing friend. She’s also in her own world a lot of the time and has difficulty keeping up with a lot of conversations. She talks to herself in her room and still can’t look servers in restaurants in the eye and has to look down when she orders her meal. These are things a lot of people may not notice, but they are challenges she faces every day. She knows she is different and was ridiculed throughout school. She has a job now and is taking one class at the local community class at a time, but I do still wonder how she will function completely on her own. It’s scary and we just do the best we can as parents, but it’s so good to know that we are not alone.
Erika says
Thanks for sharing your daughter’s story, Shannon! You’ve really encouraged me; it’s wonderful to hear that your daughter is doing well. Sometimes all we can do is take each day at a time. Hugs!
Louise says
Hi, I just wanted to let you know that your daughter is going to do awesomely when she is on her own, I have high functioning autism, I work full time and I am raising four, soon to be 5 kids on my own, the older two with autism themselves, she may never get over having to not look people in the eye, but honestly people just don’t notice it. She is going to work and have a great career, she will have friends that are extremely close, though they will be few, and I’m sure she will find someone to share her life with, even though I’m still waiting for my man lol. She is going to be awesome 🙂
Colleen E. Bohrer says
Thank you for speaking my heart 🙂
Erika says
Hugs, Colleen! 🙂 <3
Stefany says
I did respite work for a high functioning autistic child for years. I saw struggles his mom went through with some of what you mentioned. He was an amazing kid and I miss spending time with him!
valmg @ Mom Knows It All says
I am a very proud mother to two boys, one of whom happens to have Down syndrome. While I don’t personally relate or agree with everything you have written I do agree that no condition should ever define a person.
Erika says
I had no idea you had a child with Down Syndrome, Val. I learn something new each day. 🙂
Kathryn Shirey says
YES! I’m also a mom of a child with high functioning autism and this is all so true! It helps hearing from other moms in the same boat – especially when there are so many voices of criticism along this journey. Thank you for writing this and putting words to what so many of us feel.
Erika says
Hugs, Kathryn!
Diana S says
Thank you, thank you, thank you for this post. What I couldn’t put into words, you did ever so accurately and eloquently. I forwarded your post to friends and family with high hopes of shedding some light on our situation.
#soulsisters #warriormoms
Erika says
Hugs, Diana! Thank you for commenting. Comments like yours mean so much to me.
Samantha says
Thank you for this. I have an almost 5 year old son who we have been trying to find help for and finally hit a dead end in our community. Unfortunately the doctors and network here have antiquated views on Autism and wrote my son off because “he’s too verbal to have autism” – ignoring my phone book size stack of notes and forms and everything else I had to fill out for the “evaluation”. The only thing they suggested was medicating him, with no therapy or diagnosis. The school system sees his struggles clearly but they say their hands are tied until he falls behind. The closest clinic is 8 hours away and financially we can’t afford the evaluations there. It is SO HARD being stuck in between this rock/hard place – having a child who needs help and not finding any. I do the best I can at home to help him over his hurdles but I always worry it’s not enough. Its always comforting to know that other moms out there have the same feelings and struggles. Its hard to explain to others why we have to skip things or do things a certain way, because I don’t want his struggles to define him to others. But as mama bears we keep on keeping on. <3
Erika says
Oh, Samantha, I can just feel your pain and your LOVE for your son as I read this. Thank you for sharing. You are not alone, even though I know it may often feel like it. HUGS!
Dawn says
You should seek a therapist who can counsel you and your son together in order to help you with the problems
that arise. It can help to have a third party’s view point.
Erika says
That’s not a bad idea, Dawn, but unfortunately for many family’s, therapy is unaffordable. 🙁
La Shona Johnson says
Very good read. My son is four years old and was diagnosed with high functioning autism about 3 months ago. I was just feeling down a few days ago because I feel that sometimes family members don’t understand what a parent goes through with a child that is high functioning on the spectrum. My family is supportive but feels that he will just grow out of it and he will be okay. I know that he will be okay but I watch him struggle with so many things and I look at my nieces and nephews are close in age and they are not going through those struggles and it makes me sad that he is not where they are developmentally. I snap out of it looking at all the progress he has made and continues to make and that makes me happy.
Erika says
I have family members who think that too. It’s so tough when you have a child who is increasingly different from his peers. But I’ll tell you this – just the fact that your son was diagnosed at a younger age will help you both so much. It should hopefully save you some of the years of frustration & guilt that I went through – thinking that I was a horrible mom because of the way my son behaved.
Keep looking at the progress your son makes – that’s one of the most encouraging things you can do.
Hugs, La Shona. Thanks for commenting.
Lisa says
Thank you for putting into words what I hide so deeply inside. I too have a child with high functioning autism. Most of the time I feel so alone and that know one understands….because most do not. Our heartache is real. As moms, we do anything and everything for these precious ones that the Lord has entrusted into our care. They are our world, and the reason we choose to fight with all our heart and strength each day to make their world a little easier. Walk a mile in our shoes before offering to politely tell us what we are doing wrong or should do instead. Not all disabilities are the same, just as not every child is the same.
Erika says
You are so right, Lisa. It’s very hurtful when people just assume things and hand out advice, even politely. They have no idea what we go through.
Hugs! Thank you for taking the time to share.
Kristin says
I have tears streaming down my face right now. It’s true! It’s all true! People just think I’m complaining or something, but the struggle is real! My daughter is now 13. She was diagnosed high functioning autistic only two years ago. Up until then, I thought I was a horrible parent and shouldn’t have had children because I obviously didn’t know what I was doing! I STILL don’t feel like I know what I’m doing, but I’m glad I can understand what is happening from minute to minute. Thank you, I needed to read this.
Erin says
Kristin,
You’re not alone. I spent 12 years feeling like I must be crazy because the parenting advice wasn’t working for my daughter. The high functioning autism diagnosis finally happened a couple months ago, and while it’s a relief it’s also such a lonely struggle.
Erika says
Kristin and Erin, I went through the same thing with Nathan. Pediatricians and family doctors all said Nathan was just in a “phase” but how long does a phase last?! I was a young mom too and felt like I was doing a horrible job. When Nathan finally did get the autism diagnosis, I felt relief – just like you said, Kristin.
Hugs to you both. It’s not an easy road, but it’s a little less overwhelming when you know there are others on a similar journey.
Erin says
Thank you, Erika, and thank you for this post. Your words ring so true…I often felt like screaming ” It’s not a phase, it’s her!” It helps to know there are others who’ve had a similar journey, no matter how far flung that community may be. Hugs to you, too.
susan says
God gives us the perfect child… for us. Sta strong.
Jenny says
This past summer I read Teaching Life Skills to Children with Autism and Aspergers Syndrome, written by a lady with Aspergers. She said something to the effect that Aspergers is both invisible and crippling. SO TRUE!
Thank you for sharing your thoughts. This holiday season is already very hard on my two sons and me. My Aspie is off kilter and his younger brother is now old enough to be more hurt when provoked. Sigh.
You might like my post 27 Secrets Special Needs Parents Don’t Tell You over on my blog.
Erika says
Thanks, Jenny. I’ll check out your post now.
Kirsty says
Wow, what an amazing piece of writing! Our son is 5 and a half , and although he doesn’t have any diagnosis other than global developmental delay, we have ALWAYS believed that there is more to it than that, despite his paed. Telling us he is far too socially interactive to be forwarded for asd assessment. I have all the evidence i could think of, which still happens daily, for it to be brushed to the side! Our gorgeous little man sees life from a totally different angle, sometimes its frustating, other times its utterly amazing! The trouble is, he looks like any other child his age, but he is So so so different, sometimes it just makes me ache!! Hugs to you all.
Erika says
It sounds like you are doing a wonderful job, Kirsty. Just the fact that you are aware he may possibly be somewhere on the spectrum is wonderful because you can watch and advocate for him as needed. Hugs!
Claudia says
Thanks so much for this I truly needed to know I am not alone today. I have a 3 y/o son with Autism and today was difficult. (He pulled the fire alarm at birthday party we were at, the entire shopping center was evacated an I had to answer lots of questions to the fire chief who clearly did not seem impressed with my parenting skills.) After calming the storm for everyone it seems and listening to many party goers well intended words of parenting wisdom while remaining calm for my son’s sake who was having a melt down due to the noise, I found a link to this from a friend in my email. Thanks it really helped.
Erika says
Oh no, Claudia, you must be exhausted! Hugs!
People need to be better educated about autism – often they mean well, but they simply don’t understand. Especially with high functioning autism when kids are so similar to typical kids, yet they’re not, all at the same time.
Christi says
Thank you for this! My youngest son has Aspergers. He’s almost 12 and still wears pull-ups to school. People look at him & say but he looks “normal”. I wish others could understand just what you wrote ?
Erika says
Hugs, Christi. Day by day, right?
Erika says
Thank you for posting I have two kids with autism along with like 8other diagnoses and when I read your post it’s like I was speaking I love them I advocate for them and pray that they are not bullied but it scares me when I read your post it’s like it was me talking about me thank you 🙂
Erika says
Hi Erika! I love how your name is spelled. 😉
It’s not an easy journey, but we moms are strong and determined. Hugs, Erika!
Echo says
All I can say right now is, Thank You! I am currently struggling with my son and this was exactly what I needed to read!
Erika says
Hugs, Echo! They are tricky kids – I always feel like with my son that just when I think I’ve figured him out, he changes and I have to start over!
Heather says
Boy howdy if that’s not the truth I don’t know what is. It can be so defeating to take 3 steps forward and 5 steps back on a regular basis. I feel like I’m on a hampster wheel trying to get things “right”. But we are all so blessed with these children who remind us everyday that life is messy and beautiful all at the same time! My son is 14 now and has made great strides since his diagnosis at 8. He still struggles with almost everything in some way or another but he gets more amazing everyday. I have no doubt his gifts, because they have talents you may just have to look through the lens at a different angle, will manifest into something fulfilling for him in its own time.
Thank you for your message, it was brilliantly said and expressed clearly how challenging it can be. I felt as if you had read my mind!
Stacey del Fabbro says
Thank you for putting, so eloquently, into words the thoughts and feeling of my heart.
Nicole says
Thank you i have a 12 year old high functioning daughter and everything, every last word is exactly what we/I struggle with
Thank you.
shelley says
just off to see my son at the school play where i know he will cry and i will end up taking him home and tryong to calm him down. i so needed to hear this today god bless you! so beautifully written xxx
Erika says
Hugs, Shelley!
Cara says
Thank you. I felt like you spoke my heart:)
Erika says
Thanks, Cara
Alicia says
This is a very well and accurately written account of how it feels to have a high functioning autistic child. My son is 10 and we received his diagnosis just 2 years ago. I feel like it was such a late diagnosis, when it should have been “caught” earlier. When he was 2 and in day care, I feel like looking back now, there were definitely signs and symptoms that I just took for him being a shy, scared little boy. He would sit in the same spot pretty much the entire time he was there, he wouldn’t talk, to the point the day care workers even asked me if he had hearing problems! He wouldn’t engage in play with others. He was only in day care for probably less than one year and was at home with us until kindergarten. When he started kindergarten more problems started and the school labeled him as developmentally delayed and started offering him special resources. Now at age 10 and in the 4th grade he tests on a 5.7 grade level, however his social skills are lacking. He doesn’t have any close friends, which breaks my heart because I feel like at his age kids are invited to birthday parties and sleepovers and my son doesn’t get those invites. We have just recently started Focalin and even though he’s had some bumps in the road, for the most part he’s doing better. He was also diagnosed recently with disruptive mood dysregulation disorder! It definitely is difficult for us as moms, but I love my son and he makes my day. Thanks for sharing your thoughts so openly and honest. God bless!
Erika says
Your son’s story sounds a lot like my son. Thanks for sharing, Alicia. Hugs!
Val says
Erika, thank you for writing this. My beautiful girl also lives with high functioning autism. I honestly didn’t even know that this was a real thing…. I mean that there are other moms out there dealing with the feelings of guilt and worry. Since my daughter started grade 1 in a new school, I just worry about her being over looked because she’s too polite and sweet and energetic to look like she needs the help. I worry that her peers won’t see past her communication issues to learn that she can be a real friend. I worry that she’ll be excluded because she can’t talk to others the way her peers can. Even to write these fears here, for this post, brings tears to my eyes. … thank you for writing. You’ve reminded me to focus on how far she’s come. Thank you.
Erika says
Hugs, Val, to you and your sweet daughter!
Rhondra says
WOW…
My son was diagnosed at age 3 with high functioning autism….He was diagnosed early I beleive because I am a teacher in a large district and I pushed for his testing because I knew something was wrong. He tested high on the spectrum and almost didn’t make it on the spectrum (according to the professionals who diagnosed him).
This article is amazing! I am quitting my job as a teacher/educator (with 9 years experience and a master’s degree) in June 2016 to become his teacher, full-time cheerleader and his FULL-time Mom. Not sure how a single mother will make it financially but where God guides he will provide… I am lucky… I feel like his teachers are really genuinely interested in his success. However, the teacher and Mom in me is not sure that his education is tailored specifically for him. I am quitting a job teaching other people’s children so that I can teach my own.
With respect to family…I have decided that if they don’t make an effort to understand what autism is they can NOT and will NOT be left alone with him because they won’t understand why he cries for no apparent reason or quotes movie lines over and over again which quiet honestly could begin to annoy them.
He was born on 07-07-07 and I call him “LUCKY”…but honestly I am the lucky one. He is my middle child of three and the only boy. I absolutely adore him and thank God for him and his sisters everyday!
Thank you for your article…I cried and smiled! We are all kindred spirits in this journey!
Erika says
You are an incredible person and mom, Rhondra. Thanks for telling me about you and “Lucky”. He is blessed to have you!!
Lora says
I just had to respond, as I myself have a son aged 5 with high functioning autism and he was born 11/11/11 and his head was out at 1:01 ….. Strong, determined,leader like demeanour and also the middle child of 3. We have similar journeys ?
Paula says
Thank-you for putting my thoughts and feelings into the written word. I have 4 children too, one of whom has high-functioning autism. He was diagnosed in early elementary and I had already put many strategies in place to help him. I am in the field of education, so this background and experience helped me. Already having one child before him, gave me some perspective on my parenting. He’s now 17 and about to graduate from high school, and if you met him today you wouldn’t immediately know that he experienced these challenges. He will be off to university/college and will be successful, without a doubt. One of my biggest challenges is that the extended family on my spouse’s side just doesn’t get it! I won’t allow them to be alone with my children because they do not value our parenting, are highly critical and if allowed to be, damaging to my children’s emotional well-being. I am more of an advocate for my child with high-functioning autism because that is what he needs. My mother-bear is in full swing!
Erika says
Wow, that’s great to hear that your son is doing so well, Paula! Good for you for standing up to family. It’s so hard when people don’t understand and then they to try to “help” and it’s the farthest thing from it!
Me too says
I could certainly relate about family not understanding. I grew up severely abused and if my daughter was anywhere near my side they would destroy her. I think she is why I overcame my stage 4a cancer. Deep down I know I’m her oblybsoutce true help. My husband has his own issues and isn’t very much in tune with what HF but I think he is starting to understand. We all been through so much. Without each others help we all would be in a very bad place or worse.
Dawn says
Amazing article! My 10 yr old daughter has high functioning autism and I feel like you just described our journey perfectly! It feels so great to hear from someone who understands! It is invaluable! Blessings to you!
Erika says
Hugs, Dawn!
Lisa says
???????????? Thank you….Ours is 17-she tried to kill herself 2wks before Christmas last year -we didnt have a diagnosis until this summer. We still are no where close to having stabilization/support…..God bless you.
Erika says
Oh my, Lisa. Praying for you and your daughter. HUGS!
Tracie Islas says
I just stumbled upon your blog; this post more specifically and WOW! Erika, it is seriously like you took the words out of my head put them down on paper for me! My son was diagnosed with HFA two years ago, he turned 4 two weeks ago, life has been quite the challenge and a lonely one at that. It is so nice reading your words and finding comfort in them as I tear up knowing that I am not alone. It’s too bad the people in my day to day life won’t ever understand in the same way.
Erika says
You are definitely not alone, Tracie. I shed tears every time I come here and read everyone’s comments! It’s amazing how many of us moms have silently struggled. Feel free to email me any time. erika at livingwellmom dot com
Hugs!
Julie says
I came across your post from Pinterest and it was right on time for me. I have 3 sons, my 13 year old was diagnosed last summer with HFA and sensory processing disorder as well as ADHD. Bedtimes are the worst time for him, so your post was right on time for me to read. I agree 1000% with your words. You nailed feelings, fears and triumphs with my son. Thank you and I am bookmarking your site! Much love to all the moms in the struggle out there.
Erika says
Hugs to you, Julie! My son has at least 3 diagnosis too. You are not alone!
Jessica Mom in the trenches with you ;) says
Perfectly penned. Thank you! Coming off the holidays and lots of changes to our routine, we hit some bumps today. Whew. 🙂 This path is challenging, but the moments of connection and the strides forward are the most rewarding breaths of fresh air I could imagine!
Erika says
We’ve had some bumps with the holidays and getting back to the normal routine too. Hugs, Jessica!
Lara says
I participated in a couple of support groups for families who have children with disabilities. I never felt like I fit in being a mom of a 12-year-old son with HFG. This post expressed many of my thoughts and feelings. My son is a remarkable and well-loved young man but wow he presents me with challenges. Thank you for re-assuring me that I am not alone.
Erika says
Hugs, Lara. Thanks for commenting. It’s wonderful to hear that your son is doing so well. 🙂
Meagan says
Thanks for writing this. It brought tears to my eyes. I have a 5yr old autistic son and 10yr old NT daughter. The mention of medication in this article really got to me, we put our boy on melatonin because he just wasnt sleeping. Massage didnt work because he couldnt stand to be touched at night, aromatherapy only helped slightly, firmness got us nowhere. we had routine, went and saw specialists, did research on our own. we even had to put a special handle on his door to stop him from letting himself out in the middle of the night (at the age of 3 I caught him on the kitchen bench trying to stand on the toaster to get to the knives so he could make toast at 2am, another time he wanted to take the cat for a walk out the front door so it was too dangerous when we are not awake. we spent 2 years like this. no sleep, barely coping and he was tired and angry all the time. It turned out he was having seizures in his sleep and they were causing night terrors and waking him up. The melatonin hasnt stopped the seizures but its allowed his body to stay asleep and now he sleeps all night most nights! He starts at a mainstream school next month, without an aid. Its a wonder what a good nights sleep can do for development! Given what we went through you would think it was a simple decision to put him on medication. It wasnt. I still feel like we are ‘drugging’ him. I can only take comfort in that he is a much happier boy now.
Amy says
Thank you for reassuring me that I am not alone in these feelings. I am mom to a 17 year old son with high functioning autism. We have fought hard for his needs for so many years because he is so special and capable. I hope we can help him successfully transition to the adult world now.
My best word of advice to others is to flow with and accept ups and downs… Sucess does not happen on a linear path and so much can be learned from the hard times.
Take care and let’s stick together as special moms.
Erika says
That’s great advice, Amy. Thank you!
Alison says
I like allot of others stumbled upon your article on Pinterest late the other night. I’d not long settled my son despite his going to bed 5 hours prior on the evening of going back to school. It left me exhausted but unable to sleep and I was desperate for some advice and words of comfort. Reading your words brought tears to my eyes, tears of relief as I battle the poor sleep patterns and find it difficult to accept melatonin may help. As I struggle to find the right way to deal with unexpected meltdowns, obsessive behaviours, the critics of others. Sometimes.this journey feels tough and exausting, other times I marvel at my son’s wonderful unique ways and his sweet soul. My son is 7, he has no official diagnosis, and there’s a possibility there may not be one but we are a year into assessment at the Autism Centre, with perhaps another year or more to go. I’m a single mum, like all parents my little boy is my world and I strive to do right by him. It’s tough at the minute and maybe it will always be variations of tough but just knowing others are out there sharing the same concerns, love, challenges makes it feel a much less lonely place. Thank you for these words and to the many amazing parents who have commented.
jennifer dahl says
Beautifully written.
LM86 says
My 8 year old son was just diagnosed with HFA about 6 weeks ago. It’s a daily struggle as we try to figure out how to make a routine that will help not only him, but our whole family function better. My sister sent me this link and I’m so thankful she did. Sometimes it’s hard not to wish your child would just go play with kids or be lovey and snuggly. It really hit me when you mentioned them giving you a hug. I give him hugs but the feeling of him hugging me back is started to fade away.
Thank you for writing this, it’s beautiful and so perfect!
Gable Rhoads says
I started tearing up reading this. Well said!
Thank you for speaking out for us moms of high functioning kids.
Erika says
Hugs, Gable. Thank you. <3
Malia says
Love this…I cried. It’s like you could see into my mind and heart. Thank you…i feel so alone sometimes and it’s wonderful to know I indeed am not. Your words pinpoint everything we are currently going through, down to the decision of whether or not to medicate and what it all entails. With much appreciation!
Erika says
Thank you for commenting, Malia. Your words mean so much to me too! You are not alone. Hugs!
Danielle S. says
I work in mental health with children and youth. My daughter was diagnosed in kindergarten after I discussed with her amazing teacher how intervening with her the way I would with a child on the spectrum was really effective…light bulb for both of us. She didn’t fit that classic delay profile…other than speech, which we had assessed( we were told it was not too delayed, we just needed to talk to her- Seriously!) There was so much feedback from family about my parenting being the cause of her quirky “defiant” behavior. She isn’t defiant, she just obsesses…and sometimes this carries over into behaviors…she is actually a people pleaser and wants desperately to be liked. She is eight now, academically bright, verbally capable. When I tell people she is on the spectrum I definitely get some shocked responses. “But she seems so outgoing and friendly…” yep, rather indiscriminately, due to poor social cue reading. This has been an ongoing safety concern for her. When she struggles, her verbal ability is the first thing to go…she stops talking and stops being able to process auditory data. She has been such an amazing gift, she is always able to see the world in ways that are unique and insightful.
I still feel guilty that I didn’t see it sooner, I just didn’t make the connection…even though that’s my job.
Erika says
Your daughter sounds amazing, Danielle, and you are too for being such an awesome mom! I well understand that guilt of the delayed diagnosis as that was me with my son too. But you know what? We are both doing the best we can, so no more guilt, ok? Hugs!!!
tiffany says
Thank you for your post. Such great words and so accurate. My son is 3 and was diagnosed one year ago. Like so many, the misunderstanding of family is the hardest. My sweet boy has made so much progress, thanks to a program called Son-Rise, and because if his progress they minimize his challenges. I so often hear, “he’s just like his dad”, which to them means he will be “fine” because daddy is. Well he isn’t his dad and I’m not going to wait and see if he is “fine”! They usually think I’m completely crazy for all the services I have him in and the way I patent. But I’m doing what I feel is right as his momma.
Anyone interested in Son-Rise, the website is http://www.autismtreatmentcenter.com. It is so amazing and did wonders for my sweet boy and me. Parents with children of all ages can benefit. I have no affiliation with them, just passing on what has been so helpful to me.
Love to all!!
Erika says
Thank you, Tiffany! I’ve heard about Son-Rise – I’ll have to look into it more. That’s so great that your son is making progress. Way to go, Mama! 🙂
Leslie says
Thank you for sharing. I, too, have a 12 year old son who was diagnosed with HFA at the age of 10. Ironically…his name is also Nathan. This post really spoke to me.
Erika says
Wow, funny how similar. Thanks for commenting, Leslie. Hugs to you and your Nathan!
Charlene says
Great article ! I am a over 25 year prek teacher and I have had the privilege of working with many children with autism. Each child was unique, beautiful and probably taught me more than I taught them. My heart broke with many of the families as I witnessed their struggles but I also rejoiced with them when their children made big and little advances. God bless
Natalie says
Hi everybody.
I’m the mom of autistic child too. His case suppouse is even worse – simple autism and speaking disorder. But he (or we) managed to change the situation – he attends almost regulary school (with very small classes) and takes part at some theatre projects.
But should admit, our life isn’t the simpliest
Zanet says
Dear Erika and fellow parents of autistic kids
My boy EJ was diagnosed autistic about 2 years ago. He is now six and a half years old. I can just concur with all of your comments! We are a South African family living in Namibia currently; sometimes I feel that the rest of the world must have more access to better solutions and resources but it seems that ASD still remains a challenge irrespective of one’s location…
I am always checking the internet for a ‘miracle cure’ – while deep in my heart I know there isn’t one yet. I think this stems from a part of me still not accepting my boy’s condition or finding it SO UNFAIR that this beautiful blonde haired blue eyed darling child of mine has been dealt this challenge! But a part of me is also convinced that he is destined for some divine purpose and his condition is part of God’s plan for him and our family – perhaps it is just me trying to cope with this… I am not sure. I do love my boy more than life itself and try to do my best in raising him and his (‘normal’) thirteen year old sister to be happy healthy children and well-balanced adults one day.
I would like to share some successes with you – perhaps you may find it useful to try or perhaps you can share this with other parents of autistic children… you never know when you will make a world of difference in their lives by just sharing a simple tip…
Firstly I need to explain that EJ was a silent reflux baby which brought about its own set of challenges… but we also used to live in a very polluted environment (large petrochemical factories and coal mines) and this lead to a host of ear, nose and throat infections so we actually missed most of his childhood inoculations because he never seemed to be healthy enough to receive them. But really this all paled in comparison to the lack of sleep I experienced as a full time single working professional mom… My boy seemed to be running on solar power as he almost NEVER slept… certainly not at night! For more than 5 years I did not sleep properly and this nearly meant the end of me. Firstly because of the reflux, then the constant ear infections and from about 2 years old (I assume this was when his ASD developed) because of the autism! It seemed like he never could ‘switch off’. I had him at doctors, specialists, pediatricians, and even the neurological pediatrician who diagnosed him. I begged for any medication that would help him sleep. We tried pain medication, Atterax, Risperdal and even quartered adult sleeping tablets (HUGE MISTAKE – this made him crazy… running through the house at 4am breaking things…), but nothing worked. Later on I did not even care about what people would think if I asked for medication, I was so exhausted. December 2014 we went through a particularly tough patch were I went to work for the 4th morning consecutively without any sleep. That day I ‘blanked’ out and could not remember what I was doing from one moment to the next. I once again went to our pharmacist and she commented how ‘terrible’ I looked. I cried and (AGAIN) explained about EJs lack of sleep. After some discussion I informed her that I have an atopic immune deficiency which makes me allergic to certain nausea medication. She mentioned that perhaps he inherited this and perhaps it was the anti-histamine in the meds that irritates him in stead of sedating him as one would usually expect. She advised I stop all meds containing anti-histamine (which he has been taking constantly for a chronic stuffy nose). 3 Days after this his dad came to visit and said he got a tip from someone who suspected their child was autistic about a natural supplement which helped with sleep. I did not have much hope since the natural route was usually much less successful than chemical medications (in my opinion at that time). By the grace of God (this is how I describe all solutions and success we experience with EJ) we gave him MELATONIN which is a substance used for aiding pilots and air hostesses with jet lag. EJ fell asleep very calmly after about half an hour and slept through the night for the first time in his life! I however sat up and checked his breathing and pulse all through the night and a few nights thereafter because I simply could not comprehend how this natural supplement could be working! Turns out my autistic boy had a out-of-whack biorhythm and all he needed was jet lag meds to help his body realize that we are primitively designed to sleep when it is dark and wake up when it is daylight! I remember going to the doctor and asking him if the Melatonin has any side effects… turns out it has none. One capsule mixed with a bit of water or yogurt or whatever is available at night half an hour before bed and since the first night we never increased the dose and he never battled to sleep again. This helps with over stimulation, irritation and with my energy to cope with all the ASD challenges.
Miracle number two was a therapy we ‘discovered’ also by the grace of God: it is called TOMATIS therapy and it is done in collaboration with an Occupational Therapist. It involves 13-day courses of sound therapy originally happens in 4 cycles with one month ‘off’ inbetween each, and is thereafter boosted by a six-monhtly 13 day cycle. I am by no means an expert in the therapy but I can share what we have experienced: a bit of a regression during the 13 day course: ours was that EJ became irritated and had a bit more tantrums… it is now 6 months since he had the first cycle and he started to reciprocate conversations even with one or two words; he had a good vocabulary but started to use it in simple centences; he started to express what he wants and doesn’t; he can show me where it hurts (big win for us); he started to engage other kids in a play area; he holds his hair under water for me to wash his hair without any complaints; he opens his mouth for me to brush his teeth; although he prefers wearing diapers he can and does use the toilet for number one’s; he started eating food (he battled with a severe smell aversion) so we can actually order chicken nuggets and fries from KFC or McDonalds for him if our family goes for a take-out meal! These plus many many other little (but to us EXTREMELY significant) changes suddenly just ‘came about’ without any additional effort apart from the Tomatis therapy.
Does anyone know of any public forum/blog/website we can share these successes and also find out about the successes of other ASD kids – even just to TRY it? Not one doctor or specialist or website I read through EVER mentioned Melatonin or Tomatis therapy!
I do not mind figuring this out and I am convinced that I am not alone. I just think that the parents are the real specialists when it comes to conquering the challenges of autism and would in future prefer to consult with a parent first before consulting a medical professional.
Lastly we also purchased the Son Rise Program from the USA and had it shipped to South Africa. LOVE their approach and insight. It does take about 3 years to implement the program but the successes are beyond belief! It certainly is aligned with my way of parenting with love an acceptance.
Best wishes to all for an Awesometistic day!
Zanet Pieterse
Swakopmund
Namibia
Tiredmom says
Wow! That brought tears to my eyes! It was like I wrote it myself. I pour every ounce of myself into trying to be a good parent, and helping my daughter learn to be a functional person. She is so frustrating and difficult to be around, so mean to her siblings. It has been such a long, hard journey and we don’t know where it will lead us. Thank you for sharing. It does help to know we are not alone. I wish the best to all fellow parents of challenging children.
Shenea Young says
Wow! It’s like you read my mind. My child was diagnosed only 3 months ago and it’s more difficult than anyone can see. My husband thinks I am crazy for considering our son “autistic” when in my eyes it’s so apparent. Thank you for your words. It makes such a difference to know that this isn’t just my world.
Lyn says
Thank you so much for this. I really needed hearing this today.
Rebecca Hilliard says
Erika,
I don’t even know where to begin to express my gratitude for you kind words. Today has been especially hard and I came across your article on Pinterest. It was exactly what I need when I needed it. My sweet boy is 12, is in middle school and struggles every day he goes. I want him to be happy and successful and it tears me up inside to see him struggle. But no matter how hard the day is I kiss my sweet boy goodnight and thank God for blessing me with him. Thank you for helping me understand that I am not alone.
Erika says
Hugs, Rebecca! Thanks for sharing. It encourages me to read comments like this! You are definitely NOT alone!
Jenn Buell says
Thank you! I’m a mom of four, one of which is a 15 yo with high-functioning autism. This post made me cry and say, “Yes! Yes!” You get it. And you wrote it so beautifully. I’m a blogger and this inspired me as I begin my Autism Awareness Month series this month. I’m also a radio DJ and I plan to talk about this post in my Autism Moment this month. Thank you for writing with such vulnerable honesty the truest experience so many of us have.
Erika says
Thank you, Jenn. Hugs!
Dawn says
Thank you! I have 17yr old twins (boy and girl) who both have autism. They were diagnosed very late and yet they had been in therapies early. I think they would have been diagnosed much more on the “severe” side had they been diagnosed early in. It has been recommended that I pursue full custody when they turn 18. New heartaches. My mom is supportive but everyone else thinks I’m trying to hold them back. That leaves me alone in my grief.
Thank God, we are never as alone as we might feel.
Annika says
Thank you. This made me cry. My daughter is 7 and she also has high functioning autism. I just feel like giving up sometimes but it’s not an option. I just get so tired being momma bear, it can be exhausting. I love my daughter with all my heart and I wouldn’t change her for anything in the world.
With love, Annika
Jessie says
Thank you! Mum of 3 with 2 on the spectrum, one high functioning autism, one with autism and a probable diagnosis for myself to be high functioning autistic too. You echoed everything in my heart. Thank you
Erika says
Thank you, Jessie. Hugs!
Dawn says
Thank you so much for writing this post! it sums up so much of what I’ve been feeling. Mostly the “alone” piece. I think it’s so tough when kids with High Functioning Autism appear so neurotypical and when they aren’t able to cope with their emotions in a neurotypical way they (and we) are judged so harshly. It’s like an invisible disability and I often feel that unless I brief each encounter/activity/outing with “Hello this is my son and he has High Functioning Autism” there is so much judgement and lack of understanding. And even then, unfortunately, because he “appears” neurotypical people may still pass judgement. I’ve tried to share experiences with other moms whose children have autism but unless it’s specifically High Functioning, the challenges are literally apples to oranges. Not less or more, just different. So again, I thank you for giving me the peaceful feeling that comes from knowing another person truly understands.
Erika says
“Invisible disability” << I love that, Dawn. That sums it up perfectly. Sending hugs your way!
Alicia says
Thank you I didnt know it till just now ,but I needed to see that today . We have been fighting to get my 6Yr old Daughter the Help she needs For 3 yrs this past week was the end of her Kindergarten yr and we Finally got the ball rolling for her . its such a Relief but now that my Focus is off that so much It has hit me I REALLY have an Autistic Child …. I have the world prepaird for her at school all the while I forgot to at home. Heck I dont know if this makes any sence to anyone but me… Never the less Thank you
Erika says
I get what you’re saying, Alicia. It’s so easy to get caught up in everything we have to do to help our kids that we forget to actually process it ourselves. Hang in there!! Hugs!!
alison says
Erika – I just came across your post. My 4 year old was diagnosed “level 1” autism spectrum about 2 months ago. We have known for a couple of years that certain things were more challenging, but now we are in this diagnosis. You so accurately convey the challenges because he’s not clearly needing so many of the “typical” autism therapies, but we need something. I’m fighting daily to understand what’s out there and what we need. I have just come across your site, and will explore, but I also noticed you have 4 children. I have 4 also (8, 6, 4 and 18 months). I’m struggling to talk to the older boys about their 4 year old brother’s differences because i don’t want them to see him as different – but they DO. some is age, and some are because of his challenges. Any advice for helping the siblings get on board with the behavior “regimen” for a highly functioning child? Or just parenting 4 very different kids??? Thank you for your words. I needed to see them today.
Toyin says
Thank you for this Erika! You are so right about this “You are part of a unique group who may not quite fit in with the traditional autism community.
You may even feel guilty for using the term “autism” when your child is far from “Rain Man.” You may feel like you don’t deserve to use that term when others are far worse off and your child is verbal and may not even need an aide at school.”
I enjoyed reading this post and it has encouraged me today.
I wish you and your family the very best!
Kristen says
This was an amazing read! It was as if I wrote it myself! I am a true single parent to my amazing 12 year old son with HFA. I have been raising him completely solo, with no family support, friends who just cant relate, and in a community who views us as “different”. I am the forever caregiver as I am a geriatric nurse as well working long, stressful days. I frequently feel overwhelmed and burnout setting in. We are about to move 500 miles north, in hopes of a better life for us with more support. I have high hopes for my son’s future and i am his biggest fan and advocate and he is mine! Coming across your post today was a gift and it has given me hope that their are others like us out there! Thank you!
Kristen
Erika says
Bless you, Kristen! You are doing an amazing job!
Betsy says
Thank you. My daughter is now grown and doing extremely well, but the journey to get her to this point was daunting to say the least. You have NAILED IT! I’m crying right now. Your message is so very true and the depth of understanding is so rare. Thank you. Thank you.
Stacy says
I started crying when I read this! This is my daughter and myself to the T! Thank you for letting me know that I am not alone!
Travis says
As the father of a little boy with high functioning autism, it seems that I haven’t come across a lot of other fathers that are in the picture for their children. Surely I can’t be the only dad making this fight side by side with my wife, his mother. As much emphasis is placed on a mothers isolation it is just as hard if not harder for a father. If I’m not just a rare exception please someone reach out cause I often feel like a lonely man fighting this fight against society for my son.
Erika says
My husband is definitely in the picturing, fighting for our son too, but you’re right – you don’t see or hear about how autism affects fathers. You bring up a great point. Thank you for commenting, Travis. Hugs to you and your son!
Jenn says
My husband feels the same way. He is a pastor and feels that people look at him as insufficient at his job because he has a son that will have meltdowns or outbursts of anger, and there isn’t much we can do about it except to let our son just go through the motions, so to speak. But other people look at us and say or think, wow they must not be disciplining him. And I’m sure as a dad it hurts a ton to see your son be “different”. Praying for you, YOU ARE NOT ALONE!!
Nichole says
i just wanted to say thank you. I am an occupational therapist with a 10 year old daughter with high functioning autism. I know how to advocate for her, I know what therapies she needs, I know how to set up her day for success, But unless you are walking the walk every day with a high functioning autistic child, you feel like there is no one to share your heartbreaks and successes with. Top that off with information overload and living in a very rural community, and isolation is the only way to describe it. So thank you for helping me and every other parent of a high functioning ASD child a little less alone.
Jenn says
Hello, as everyone else says, thank you for writing this post. I just happened across it and I am so happy that I did. I have an 11 year old son that was diagnosed with Asperger syndrome last year. I have known since he was just a baby that something was different. We had him evaluated at age 4 and the doctor said that Ethan’s brain was just working at all different levels and that eventually it will catch up with itself. Well I wasn’t really pleased with that answer and the years went by. He became more aggressive towards his little sister and us. We then moved out of state and with all the changes that were happening in his life at that time he was struggling. I had him evaluated again and he is in the range for Asperger/high functioning autism. (I’m told the doctors are going to stop using the term Asperger). I asked our doctor where I could take Ethan for help and the doctor wasn’t much help. Nobody in that area worked with kids over the age of 6. Well now what am I suppose to do????? I’m a stay at home, homeschooling, pastor’s wife, with three kids, that just moved away from all friends and family and had no support outside of my husband. Well I got annoyed enough about the doctors not being able to help us that I started looking into everything myself. I came across Asperger experts and they have a good online program. We eventually ended up moving back to our hometown and will be looking into finding some help for Ethan. He seems happier now that we are back and a bit less aggressive. But I do notice a sadness about him. He misses where we just moved from even though we were there for a pretty short time (3 years). Everyday since he was a baby I have walked on egg shells around him. Never knowing what will trigger him into a meltdown or a shutdown. It’s oh so tiring!!! Guilt. Oh yes! Guilt that I feel so burnt out by him. Guilt that I do t have the joy that I should have in being a mom. Guilt that I count down the days until he graduates. Guilt that my other kids don’t get as much of my time as he does. Guilt that for years we thought he was just being disobedient. Sadness also that I look at other families and see such happy children and a mom filled with joy as she raises her kids, and think to myself I wishmy family was the same way. Instead we have happy moments here and there between the constant correction that he gives to his little sister, between all the “I can’t hear you” moments when we ask him to do something, between all of the struggles to just brush his teeth! Every day has an underlining of “what’s going to happen today” doom and gloom. A new couple just started attending our church and their daughter acts just like our son. It’s amazing to know that there is someone out there that is going through the exact same things! Comforting but sad too, as I wouldn’t want anyone to go through it. I’m looking forward to getting to know this family better. Everyone needs support!!!! Everyone! It’s to draining to do it all alone.
Carey says
Erika, Thank you for this beautiful and very relatable letter. I just came across this as I did an internet search. We could be good friends! You touched on so many things moms of theses very special kiddos share. I started to cry when I read your line sometimes “you feel very very alone.” I have wonderful friends, but truly, it is difficult for those not going through it to truly understand your child, and the struggles that exist daily. I didn’t have the internet or wonderful resources like your blog when she was younger. My baby is now 20 and life has gotten better is some areas, but more difficult in others. While she is beautiful and looks like a 20 year old, she has the social emotional maturity of someone much younger. We had an awful situation this fall while she was attending community college that almost crushed her heart and swallowed mine. She was sexually assaulted by someone she know and trusted. It was unimaginable anguish. She is so trusting and naieve, But prayers and love and long talks with God are what get us through.Do you know of any bloggers, support groups, etc online for moms of older kids with high functioning ASD? I would love to connect with other parents dealing with issues we are going through. Thank you so much!
Krystal says
Thank you. I cried through most of this article because you said every bit of what I’m feeling right now. My son was diagnosed with “mild” ASD today. He is almost 10 after being dissatisfied with an ADHD dx for 5 years I finally have answers. Well, I finally have an explanation that makes sense, kinda. I also had my heart break all over again listening to him talk about being left out, and feeling lonely. I understand the lonely feeling, like you said it’s not like we just go on play dates. It’s also not like we get invited anymore. I really just can’t thank you enough, I wish neither of us knew these feelings but I find comfort in knowing I am not as alone as I feel.
Erika says
Hugs, Krystal! To you and your son…
Jen says
I have a 6 year old daughter that hasn’t been diagnosed yet; but I believe she is High Functioning Autism, OCD and Sensory Issues. She does great at school, some how not doing any ticks that anyone sees. When I pick her up from school (full day reg. Kindergarten); it starts. I always forget to take care of my self. I have a husband and 18 year old daughter at home and a 22 year old daughter not far from home. No one else gets her like I do. Husband and daughters are no help with her. They just think she is miss behaving and a lot of times they just yell at her to stop her ticks or behaviors. She is not potty trained yet either; she has no interest at all. I finally got her to go at school; she was holding it all day long 🙁 At home she wants a diaper and would rather stay wet and poopy sometimes instead of wanting me to changer her. If I try to change her and she doesn’t want to be she hits, kicks screams and thrashes about. So I just wait. The problem lately is she keeps getting ear infections on her 4th one I believe in the last 4 months. She also gets fever of 103 degrees with the ear infections the one before this one she had 103 for 4 days that only went down to 101 with Tylenol or Ibuprofen. Right know I have no insurance and we make too much to get on AHCCCS for her. Looking for new pediatrician for my old one had no concerns about my daugher ever. Even when she wasn’t talking much at the age of 2 and then 3 years old. I got her tested and was found to be delayed enough to get into public school preschool. She was there for 3 years – 3 days a week for about 3 hours. She started to improve after only a month or two in preschool. She still has a few delays but the Elementary School she is in don’t see them or don’t care. She has missed so much school, and when she goes she is tardy a lot. All of her little things that can go wrong some days. I was beginning to think I was going CRAZY and the only one out there until I got on Facebook. I found a few more just like me. 🙂 I have been having a bad few weeks so glad I saw you article it made me smile and knew even more that I am not alone. We just have to figure out how to let EVERYONE ELSE that our children are SPECIAL AND DIFFERENT BUT STILL HUMAN BEING AND HAVE FEELINGS. I love her more than anything in the world and would do anything for her. THANKS AGAIN AND *HUGS*HUGS*HUGS*HUG*HUGS*HUGS*HUGS*HUGS*HUGS*HUGS*HUGS*HUGS*HUGS*HUGS*HUGS*
Jody says
Thank you for writing what I feel every day. It’s so hard for me to explain to people what challenges my son and I face, especially the guilt over medicating. I have shared the article on my FB page and encouraged my friends to read it.
My son will change the world one day, even if it’s one person at a time 🙂
Anne K. Ross says
This is a great post that many of us can relate to. You might like my book, Beyond Rain Man, our very similar story (medication, treatments, feeling like we were going crazy). My son is now 23 and doing well. I’m also a school psychologist so I have lots of tips for families and lots of information for professionals so they understand the breadth of the spectrum. I’ve heard from parents who say it has helped them negotiate the school and medical systems–and that’s exactly why I wrote it! https://www.amazon.com/Beyond-Rain-Man-Psychologist-Spectrum/dp/0997040009/ref=sr_1_1?ie=UTF8&qid=1459124694&sr=8-1&keywords=beyond+rain+man
Jill says
My son was diagnosed a couple of months ago. I didn’t think anyone in the world understood. Until now. I’m not alone anymore. Thank you.
Tami says
Thank you for posting this! I too like a few stuumled upon it whilst researching a million posts on the net regarding Autism. I am not too sure what we are dealing with in regard to my 3 year old as he has always been affectionate , answered to his name, gave eye contact, laughs a lot, has no sensory issues but he laughs & flaps when excited & was a late talker.. started coupling word at around 2yrs 4months. He now has quite a good vocabulary & speaks up to 7wprd phrases. I had gone to a few professionals who had ruled out autism even though he had stereotypic movement. They felt that he had anxieties & was a perfectionist even though he’s never lined any toys up & plays with every toy in his play room. But now that he’s started kinder he won’t sit still, constantly smacks & bites other children if they have the toy he wants etc So we will be starting therapy & the parediatrician & the school definitely feel he is on the spectrum. So we will start OT & then do the necessary tests. But it’s a scary, lonely road & I cry a lot! And like your article says ‘I just wish people could see how amazing my child is!’
Christie Weidemann says
I realize this article is two years old, but I am just reading it now and I have tears in my eyes.
kim poston says
I’m weeping as I type this. My son is almost 18 yrs old, and I’ve known since he was less than a year old that he was different. I’ve fought for him every day of his life, including firing doctor after doctor who downplayed his issues and my concerns. I was labeled a helicopter parent by doctors and their staffs. I had given up on official help and was teaching/helping him based on my relentless and continuous research.
I was at my wits’ end when a change in our HMO required a change in doctor. We were blessed to get a doctor who, after our 2nd appointment, asked me if anyone had ever mentioned my son might be Autistic. He instantly became my hero. Unfortunately, the diagnosis was just 2 years ago.
I try not to think about the missed opportunities for him. I get angry if I ponder it too much. I start second-guessing what we’ve done, instead of focusing on all that he’s accomplished.
This blog post was like you had been a fly on the wall in my most private moments. No one really understands. There are nights I can’t sleep for wondering what else I can do to give him at least an even playing field. I’ve truly done everything I know to do, and it never feels like enough.
Erika says
Sending you lots of hugs, Kim. Don’t feel guilty – think about everything you ARE doing for your son. The truth is we can always do more – it’s just how life is – but we have to remember 2 things 1) we are only human and can only do so much and 2) we have to trust that things happen for a reason and the timing will work out.
Evan says
I stumbled across this after getting my diagnosis of High Functioning autism last night. I’m a 16 year old boy and have been struggling socially for god knows how long, years. It never occurred to me that I could be autistic but I definitely knew that how I was feeling and how scared I am socially wasn’t like everyone else. It frustrated me. My mother is such a kind lady, she deals with me and my two sisters who are also 16, we’re triplets, my older brother and my older sister who has Aspergers. She always says she wishes that she could just wave a magic wand and make everything better. My psychologist said after she said I had the diagnosis that she was going to discharge me, which was terrifying. I don’t like change and I struggle badly with content depressed moods and self harm. Which are NOT caused by the autism, despite her believing so.long and me being too awkward to tell her to shut up and listen to me for once. We went down the medication route last year when I struggled with sleeping, as all the doctors assumed that since I didn’t get sufficient sleep it made me feel very low. Which was never the case. And then then took me off it once I attempted suicide. That was when my moods weren’t as bad as they are now. It’s so frustrating for both me and my mother. She just wants me to be happy and so do I, really. It’ll take time and some persuasion, and probably ditching the current shrink and finding a new one till I get the chance to be happy. Sorry for the rambling. Your blog would be so helpful to my mother, I’ll recommend it to her and I honestly hope you carry on doing what your doing to help parents like my mother.
Lauren says
I just came across this on Pinterest. I feel like I will look over my shoulder and see you there because you’ve just told my story. I’m sure I’m not the only mom to feel this way. It is such a mix of emotions having a high functioning Autistic child. My son was diagnosed at 3 and is now 12, this has been our life for some time. He’s beyond incredible and has overcome more in his short 12 years than anyone should in a lifetime. I find myself trying to convince those unkind as to how incredible he is. My worries overwhelm me some days but I know he is God’s because we gave him back to Him when he was born. I couldn’t but more proud but would be lying if I said I don’t often wish for more “normal” days for him. Praying for all of you Autism moms and for the sometimes difficult but incredible journey we get to experience.
Erika says
Beautiful words, Lauren. Thanks for sharing!
Aline says
We do not know each other, yet you described me and my thoughts better that I could ever, not gonna lie, I’m in tears of mixed emotions and as a latina is being awfully difficult to find the support I wish I had within my community as most of the people from my culture tends to judge and seem to always have a say on what they think I am doing wrong.
Any way thank you for writing this!
God bless you!
Todd Sensing says
Great article. As a dad, I can relate to many of these points. We have 2 sons on the spectrum with varying levels of abilities so it’s often tricky to plan the day to day because what they can each handle sensory-wise differs so much. It’s always nice to hear other parents share their sentiments on the subject.
Stephanie says
Omg, I’m crying. It’s like you looked into my very soul. This is 100% accurate. Thank you for putting into words what I feel.
Sheri says
I appreciate your story. I am an early childhood teacher, with 2 sons. The oldest is HFA and ADD. I took advantage of my connections at school to get my son services for speech and OT before he was school age. At that time he was 3 with a developmental delay. We also had him in speech at the local health department.
Everyone has access to the same services. Most just don’t know they exist. Please check with your school district and health department to see what services they offer.
The struggle is real. It’s daily. My family is very fortunate that we have so much support from family and friends. My son is “normal” to my husband and I. No he isnt like his little brother but no 2 kids are like each other!! He has overcome so many fears and struggles. Each one small but MONUMENTAL! We continue to teach him tools to help himself. We love them both the same but different. They both hold our hearts in their little hands!
Hanneke says
As a mother of an 8 year old high functioning, yet terribly struggling Aspie boy, it helped me so much to read and recognize all you’ve wrote. Especially the part about the medication hits the mark… Thank you for letting me feel less alone!
Jeanne says
Wow! Erika, you said it all perfectly! My 12 year old daughter was just diagnosed with ASD. I’ve known since age 2 that something wasn’t right, despite no one believing me. It’s been a horrible journey to try to find some help for her and my family. Calling the police on my daughter and hospitalizing her 6 times has been so incredibly exhausting. Her speaking of suicide and several mild attempts brought me to think of ending my own life several times. It is torture watching your child go through emotional and mental struggles and not know what to do. I can see the pain in her eyes, as I know she does not want to be this way. Feeling helpless has defined me for years now. It’s been a maze of dr appts, psych testing, changing schools multiple times, school refusals, ER visits, diagnosis changes, aggression-mostly towards me and medication changes. There are days/weeks that I can’t function at all. I have nothing left. Your article was right on for me. As we still search for answers and help, I will remember that I am not alone!
Thanks Erika!!!
Amy says
This was amazing… you described every feeling I have had over the past several months after my daughter’s diagnosis. We struggle daily but it is good to know that others have the same internal struggles I do.
Natasha says
I don’t even know you and I love you for this article. From the bottom of my restless (and sometimes hopeless) heart, I deeply thank you, I needed these words.
Crystal says
WOW! Every word, every thought, every doubt, I have felt! My son is six and considered high functioning. God has been so good to us and he continues to fill my gas tank when I’m running on empty. Thank your honesty.
Erika says
He does the same for me. I wouldn’t be able to walk this journey and still function without Him. Thanks for sharing, Crysal. 🙂
Sydney says
Thank you for this. I found out a few years ago that my daughter has autism. She’s pretty low on the spectrum but has had developmental delays and speech delays due to being vaccine injured at 15 months. She is now 5 1/2. It’s doesn’t get easier. I still struggle trying to find out how to discipline her and understand and remind myself that she is very different from my two other children I often feel guilty for lashing out on her, but sometimes my patience gets really stretched because I’ve got three 5 and under. I hope to find out how to better parent her.
Erika says
Sending you big hugs, Sydney. My son was vaccine injured too. 🙁
Jennifer Brandt says
Thank you for this article. My daughter is 13 and was just diagnosed with Highly Functioning Autism. I have been saying since she was 2 that there was something different but no one listened and now we are going through hell and back. It was like a switch turned on the beginning of this year and she started with cutting and then anorexia and the depression and anxiety. Now she is accusing my husband of things he never did. I feel lost
Maria says
You are not alone. My son is 13 and was also recently diagnosed with high functioning autism. I’ve always known. In our case he has had violent tantrums and inappropriate and unsafe behavior. His therapist he had only seen once (had just started) requested that he be admitted to a psych center after he tried to hurt himself. He was later transferred to a residential treatment for kids just like him. Surprisingly, he feels at home there. It’s not permanent but he receives therapy, school, and social activities there along with so much more. Best thing that could’ve ever happened for us because I was lost. I had no idea what to do. I started locking myself with my younger children in my bedroom at night and putting up cameras inside the home. He was also realizing he was now bigger than me. It was a scary and sad time. We’ve found some normalcy and I visit him often for therapy sessions and to bring things to show him I’m still here. Things are better for now. Know you are not alone! Don’t lose hope! You have a diagnosis so start getting those resources in place. In Maryland, I was able to get him set up with Medicaid so I was able to remove him from my insurance and everything is covered for him since it is considered a “disability”. Once they have Medicaid then your child qualifies for a lot of programs. I’m still in the beginning stages of that but when we were once denied because he only had an ADHD diagnosis we are now immediately approved since he has this new diagnosis of autism spectrum disorder. I will pray for you and your family…please pray for mine. There is light at the end of the tunnel…your tunnel may not be the same as mine but we’re on the same track! ~Hugz~
Maria says
I needed to see this today. My son is 13 and was just diagnosed with high functioning autism. He’s very talented…plays music by ear and draws amazing pictures. He’s so smart but I always knew there was something. It can be overwhelming for the entire family. I’ve felt so alone and so lost. I have 2 younger children 6 and 2 and safety is so important not only for him but also each member of the family along with the family pets. My son is 13 and this past year became a danger to himself and to others and starting doing inappropriate things and being unsafe. He also has depression and anxiety and has tried to hurt himself. He just wants to be loved and be everyone’s #1. It became too dangerous that my son had to be admitted to a psych facility and then a residential treatment center. I didn’t realize how much it was taking out of me until he wasn’t there. This isn’t long term but it is immediate help and my family can meet with him in a safe and monitored environment. I love him so much and although its hard for him to see and understand it, I make sure that I still include him in everything. We’re still getting xmas gifts, I brought thanksgiving dinner to him and sat and ate with him, etc. I’m at the early stages of getting help in my situation so I’m hoping it only goes up from here because we’ve been at the bottom for so long.
Heather H. says
I almost cried reading your post because it was as if you were speaking directly from my heart. I have a five year old with high functioning autism. We had an official diagnosis then it was taken away and replaced by a bunch of other diagnoses that seem like they just compartmentalized all the aspects of high functioning autism. It is incredibly frustrating, draining, and lonely. I’m also a military wife and my husband, while very supportive, is not here very much and we are stationed somewhere I don’t have a support system. Your words made me feel so much less alone. I immediately subscribed to your site. Thank you so very much for what you do.
Carmen says
Thanks so much for this, I felt so alone and like no one would understand what it is like. Thanks
Lucy says
Thank you! It’s like you read my mind heart and life!
Lindsay says
I know this was written a long time ago but I just came across it now and it is very helpful so thank you , you are still helping so many mothers take a deep breath and let it out knowing they are not alone, I am that same mother going through those same things.
Erika says
Hugs, Lindsay. you are not alone!
Angie says
My son just turned 18. He has high-function ASD. I think one of the hardest parts of it all is that people can’t tell that he’s any different from any NT kid. Therefore, they expect him to act “like everyone else.” People don’t get the slight little oddities about him. To others……he’s just moody & weird. He has a hell of a time with relationships & that is the most heartbreaking part of it all. Seeing him alone so much…….seeing how difficult it really is for him to maintain an actual friendship any longer than a month or so. It’s hard. So hard. My heart has broken a million times over the years for him. And I imagine it’ll break many millions times over again. I love him so much. He struggles so terribly in so many aspects of his life. Thank God he & I are close and he talks to me. I’m always his #1, biggest advocate/cheerleader. I’d do anything in the world for that boy. But yeah…….it’s pretty hard. A mother is only as happy as her saddest child.
Erika says
Thank you, Angie. This is so encouraging for me and I’m sure many other mothers too. My son just turned 16 and I see more glimpses of his amazing future all the time. 🙂
Lynn says
High functioning autism is just one my last kiddo’s labels, but he’s “high functioning” with all of them. I am feeling buried, often hopeless. I get compliments of him everywhere we go. He can be very polite. He’s great at complying, without understanding – a real problem with school. The inconsistency, possible mental illness(es), makes life seem impossible many days. I don’t know anyone who really understands, except one professional we work with. I am thrilled that you can actually “get it”!
JULIA WOODRUFF says
OMG YOU GET IT YOU REALLY DO :,(
I WILL HAVE TO COME BACK WHEN I CAN STOP CRYING. DIAGNOSES IS VERY NEW, MY HEART IS FAILING AND IM SO AFRAID FOR MY PRECIOUS LITTLE MAN. JUST HAD TO SAY THANK YOU I WAS FEELING SO DESPERATE AND ALONE.
Joan @ Bible Verse Prayer says
Light, love and my prayers to every family with an autistic child.
May God give you the strength you need.
Lynnette says
I felt like this was written directly to me. Like you new exactly what I was experiencing. Thank you for this. It is a daily struggle. And it’s hard to talk to anyone. I have searched and searched for somewhere to help my son, who is 11 make friends. It is a lonely road.
Erika says
Sending you hugs, Lynnette. xx
Ashley Clement says
Hello! My sweet 4 year old Nathan has just been diagnosed with high-functioning asd. It has been a long road and a lot to take in. This was a wonderful blog! Thank you for your transparency and willingness to help other mamas like me. God bless you and your sweet Nathan.