An Open Letter to the Mum of a Highly Functioning Autistic Child

an open letter to the mum of a high functioning autistic child

Dear Autism Mama,

You have become so well versed in putting on a brave face, and are so convincing when telling people you are fine, that most do not realise how broken you are. I do though.

I see your anxious looking face behind your big black sunglasses, worn in all weather to disguise the exhaustion and sadness in your eyes. I recognise your pained expression when you’re waiting for your child to come out of school, knowing that their mood will dictate your entire evening.

Sometimes you feel like a fraud, because your autistic child is high functioning, and you question whether you even have the right to complain when other families have it so much worse.

You get the feeling that some people think you’re over the top. That you should be more relaxed about late nights and last minute changes to plans. It can appear that they aren’t respecting your need to stick to the routine, and it infuriates you when they meddle with your system.

autismLargely people are well meaning, but some are plain ignorant.

“Are you sure?”

“They don’t look autistic.”

“I’ve never once witnessed them being anything other than lovely.”

“If they hold it all together at school then surely they are fine?”

“Maybe they’ll grow out of it with enough tough love”

Your heart breaks for them when they don’t get invited to birthday parties, but you’re also relieved, because it’s one less disaster waiting to happen to deal with.

You feel like a failure often. Like there is always more you should be doing.

You’ve heard that certain diets can help with autistic kids, but there’s no scientific evidence backing up these theories, and you’ve got way too much on your plate to be making such drastic lifestyle changes unless you know for certain they will provide results.

All your efforts go into putting out fires – stopping the meltdowns in their tracks, breaking up the fights before they get too nasty – and it leaves no room for you to enjoy your children.

You try not to spend too much time on Facebook, but can’t help yourself. You do your utmost to tune out to other mums talking about how great their kids are, but it still stings a bit when you see your child’s peers excelling and leaving them behind.

You agonise over how their behaviour is affecting their siblings

You despair when you see reflections of them you’d rather not in your other children. On particularly dark days you worry they are also on the spectrum.

You’ve learnt that jumping on the spot when things don’t go their way is the warning signal that an explosion is coming. Some days you stay cucumber cool and manage to avert it. You encourage them to channel their energy elsewhere. Perhaps they create you a mini masterpiece and for a few minutes you feel proud of how far you’ve come. Other days it’s all too much and you get angry yourself, essentially have a temper tantrum and make everyone’s life about a million times harder than it needs to be.

I won’t even bother wasting space talking about the sheer horrendousness that is known as the witching hour!

Although you and your other half work together as a team for the most part, you still fear for your relationship long term. Are your foundations rock solid enough to survive autism? You certainly hope they are, but wouldn’t want to put money on it.

If you can get through this you can get through anything you repeat like a mantra.

Crazy thoughts run through your mind every day. How will you be able to equip them with all the tools they need for life? How will they cope when they’re older? Will the big bad world understand your precious baby, or will it swallow them up? Will their invisible disability ruin their chances of happiness?

You wonder how much more you can take, and celebrate getting to the end of another week without having a breakdown.

I know it’s hard, but can you please promise me these things? I know from experience they can make all the difference. 

That you’ll stop being so hard on yourself, and start being kind to the woman in the mirror?

That you’ll seek solace in the things that make you smile, find your happy place and visit it often?

That you’ll take up any offer of help that’s on the table?

From one autism mama to another I am certain that you are doing a sterling job, even if you don’t think you are.

All the very best to you and your family.

Keep on keeping on. It’s all you can do!


BTBY stack of bookson-autism-and-hard-work-finally-paying-off

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115 thoughts on “An Open Letter to the Mum of a Highly Functioning Autistic Child

  1. I found this whilst searching yet again for some answers and insight….could not have explained things in a more honest way….we mums are only human and to know i am not alone in my daily battles, tantrums, chaos, that my life now is, gives me some relief. On the outside I am smiling but inside tells a different story. I just about hold it together and I barely have the energy and time to enjoy my other children. I will try and take more time to stop beating myself up and step back…and although my beautiful boy with ASD and SPD consumes every minute I think I need to look at my other 2 beautiful girls more and help them as its hard for all our family. I don’t think anyone has any idea how having a child with ASD affects a family ONLY us living with it can fully understand the impact…

  2. Gosh. Its as if you have heard my inner most thoughts.

    I have also noticed that sadly, I don’t get invited out with some of the other autism Mums. Some of them go out ocassionally to have a natter and let their hair down. My child – it seems – is not autistic enough… or perhaps I don’t struggle as much as they do(!)

    Being an autism Mum can be lonely in ways you least expect.

  3. I love this article so much, you have described my life to a T! My 14 year old highly functioning son can be delightful, funny, and outgoing. What others don’t usually see is he can be a real jerk as well and make our lives a living hell. Sometimes I feel resentful I have to live with this person, then of course I feel guilty for feeling that way. Thank you for your kind words and insight!

  4. I chanced across this website and from the first sentence it torn straight through me. I read through the messages and like many, you saw through to me. ME. It was both reassuring and terrifying. My son is in 6 years old and I feel like we are at the beginning of it all. We always knew there was something unusual there however it was only until school started that it was truly triggered. Thank you for your words and I will share this with my family and friends. I had tonight my mum phone me offended that I had put boundaries around her visit. We have learnt that Mon to Thurs has to be absolutely strict with the routine otherwise there is a meltdown at school the next day. So your words about disrespecting routine hit home. Thank you thank you thank you. I will bookmark this post and use it to soothe my often battered mumma-soul. X

  5. I appreciated your article and your genuine honesty. It helps to hear others articulate what I experience and forget that it’s not normal because it’s become routine. I resonate with not knowing my child’s mood after school, it’s predictably unpredictable. Weathering and deflecting his moods, outbursts, meltdowns is exhausting and a daily routine. I have found keeping his blood sugar stable by minimizing sugar and processed food helpful as well as protein at breakfast and regular healthy meals a must. He is night and day.
    Also, he needs lots of sleep or he is irritable, miserable, and difficult.
    As a widowed single parent when my son turned three, life is stressful enough. I always felt there was something “off” or different with my child’s behaviour and hoped he would grow out of it. My son is now 11 and I see that his behaviour is ingrained and that we both need tools to cope. Our Pediatrician is having the school test him for ocd and high functioning autism aka Aspergers which I think is accurate.
    It’s a relief to know what we are dealing with as he is a very bright loving kind generous boy who just wants to fit in. I finally feel hopeful and supported yet fearful of being labelled and shamed. I am broken and overwhelmed and find it difficult to stay centered and calm. My child’s behaviour can drive me to the edge and over and lately I have zero patience or tolerance. I am at my wits end and find myself sinking into despair. I feel so alone and isolated, wearing a mask day to day as I try my best to get thru the day.
    I’m sooooo exhausted and exasperated. The emotional & mental toll is relentless. How do parents cope without feeling like your going insane?
    My life is like the movie “ Groundhog Day” with an autistic twist. Maybe they will make a movie after I write a book ; )
    Blessings to all the parents & children in and off the “ Spectrum”
    Thank you for sharing your voice

  6. I am s grandmother of an 8 year old autistic boy who was abused and abandoned by both his f his parents. I am in the process of adoption. His brother who is 6 is also being adopted by my daughter. It has changed our lives considerably. Neither her or I have any help or relief, she has 3 boys of her own and two step children.
    My husband is 83 and has some health issues. So no I don’t have any other children at home but I have my husband. Due to extra costs I am trying to work part time when my grandson is in school. I also have my 6 year old when my daughter works nights. As I said before our lives have changed drastically. I live my grandsons very much, and yes they are better off without their parents for sure. But just how long can I provide for this guy of what he needs. He is functional with dressing eating (pizza) only he helps bring in the groceries. I have gotten him on meds that has helped with his meltdowns some. I know I am not the only grandmother in this boat but there definitely are days I feel like it is sinking. There is never any me time. I use to ride horse and was camping with my horse. Haven’t done that since April

  7. Thank you for so eloquently writing down how I feel daily. It helps so much to know I’m not alone even if it feels that way sometimes. This post has made me want to seek out other mums so that we can support each other and lift each other up again when we need it as that is what your words have done for me tonight. Thank you. ❤

  8. its so hard some days to keep on going we know this so well our son has asd/spd the daily challenges you face as a parent of a child on the spectrum going from trying to toilet training and your child was still in pull ups after age 5 he is 8 now severe constipation,the constant meltdowns.anxities,aggression and the communication is so awkward he is classed as high functioning level 2 moderate autism.

  9. A friend sent me this article today and I can’t tell you how much it meant knowing at least one person understood. Well said and I hope you are listening to your own words and taking care of yourself!

  10. Thank you!!!! As a mom of not one but 2 high functioning kids with autism. I cry since the first verse. Thank you for understanding us!!!!!!

  11. Thank you for putting into words exactly how I feel daily. This is inspirational, I appreciate not feeling so alone.

  12. Thankyou, this is me. I sobbed from the first paragraph. Our 7yr old has just been diagnosed as being high functioning, you can imagine all the guilt that come from years of just thinking hey was highly sensitive and anxious.
    He starts jnr school this week and my heart is breaking.

  13. It’s as if you know me!! Big luck and love to all those out there trying to make sense of it all. I wouldn’t change my boy for the world. He is my world.xxxx

  14. Thank you for this! We just had our one year anniversary of my son’s diagnosis .. it’s been a whirlwind year.. reading posts like yours help so much.. ☺

  15. Thank you for this post. Some days are harder than others. Sometimes it feels like one step forward and then two steps back. Other days, it is ten steps forward and you are thrilled, which only then make the days where you fall back, even harder. My one wish, teach your typically children to go be that friend to the a child that may be just a little different but longs for friendship. Thank you for your letter.

  16. Than you. My son is 14.5 you. Diagnosed first Aspergers w/ADHD, ODD, later, ASD, ADHD, GED. I’M EXHAUSTED. He’s my heart and soul, sweetest, most intelligent, gentle soul, but I worry the world will chew him up. He gets ripped off at school in spite of his friendships and honors classes. He’s an easy Mark. I don’t see him driving at 16 or moving out at 1i, but he intends to attend college where I believe he will be successful, from home. My new husband of 1.5 years is at a loss. He wants to know how much longer I’m going to put my life on hold (working on Masters and then career) for my son. He seems baffled and as if he has one foot out the door when I say, “we don’t know, what we don’t know”.
    I’m all he’s got. We don’t qualify for financial assistance based on his income and I’m stay at home grad school and have been my son’s personal care attendant, therapist, driver, social director, tutor, coach, life skills trainer, nurtured and loving support, nearly all alone since day one, per my lack of resources in my previous location.
    So how do you answer that? I’m sorry our life is an inconvenience? I do what I do out of instinct and love. I am my son’s translator to the world, and I translate the world to him. There is no time frame on that. I’m done, when God says I’m done. I pray his plan is for my son to be independent, but I can almost guarantee God’s timing is not going to be mine or anyone else’s. My son, however, will be the first to let me know. He always is.

  17. I too write a blog as my son is high functioning and admits when he speaks as an Advocate and applies for Jobs and meets new people he feels it is only fair they are aware just on the off chance his quirks get in the way… However, this hurts him more than helps, most think it’s an excuse…

    Too often we feel like we are living on an island ….

  18. I am in tears reading this. My son was just diagnosed with high functioning. I’ve felt for so long that he was a little different than his peers and it breaks my heart when he complains of not feeling like he fits in. Then I wonder if he would have been different if he would have had more social experiences as a young boy. My husband and family blame all of his behavior problems on problems in our marriage. This has been so difficult and emotionally exhausting. I’ve wanted kids since I was little and I feel like such a failure. I thank you for this article, it makes me feel not so alone. Everything you wrote is my feelings exact. Thank you thank you thank you.

  19. Thank You for your blog and I admire you for sharing your life with us. I am waiting to see my daughters pediatrician for a diagnosis but, all the signs point to high functioning autism. I can so relate to what you wrote about people saying”she does not look Autistic”. However, when she comes home from school everything falls apart. It is a struggle most days since I have ADD and am a working single mom of an autistic child. I am just starting to reach out for support. The sleepless nights, meltdowns, extreme anxiety of public places from my daughter sure takes it tole on your body and mind. To stay sane I make sure I spend time with friends, pray and eat well. I am soaking in as much information as I can and my daughter sees an O.T , speech therapist and resource teacher once a week. It is overwhelming with all the specialists involved but, I know I need to be her best advocate in getting the proper support she needs. One day at a time.

  20. I love this blog entry!!!! Wow u have just summed me up in on post! My son of 7 is high functioning and I have a 3 year old son who in my opinion shows signs of classic autism, he has not yet been diagnosed ! His app is actually Thursday of this week, but thank u for this blog ! You are so spot on x carol

  21. Thanks for this post… my 12 years old son was finally diagnosed with asd. It has been a battle as everyone thinks his issue is behaviour, lack of boundaries or being rude… I always knew that my son was a high functioning autistic child and being a single mum doesn’t help me feeling that I am doing the best possible. I will share the post as I would like my friends to understand my son.

  22. So glad that I found this today, I really needed to read it. My high functioning twelve year old is doing so amazingly well with his confidence for the first time ever, that I stupidly thought that I would push it and decided to try and take him to a maths class, which he had already told me that he really didn’t want to go to, in my infinite wisdom I decided that he would be fine once we got there. So, I didn’t tell him until last minute (unheard of, I know!) and the result was a huge battle and him completely melting down and crying himself to sleep. I’m so cross with myself as we’ve not had a battle about anything for such a long time and now because of being a control freak parent, I feel that I’ve completely failed him. I really only wanted him to have his pick of the schools, to do whichever computer course he wanted, but I should have just been content with his progress and not pushed things. Anyway thank you for writing such a heartfelt letter, I recognised all of it and feel a bit better about messing up now, we’re only human after all and all make mistakes,

  23. This letter has just made me feel for the first time since I had my little boy understood. I have been fighting his whole life and until this day until this letter I was so lost. From the bottom of my heart thank you for caring about how I feel I might actually make it now I might have a chance x

  24. Wow I’m so glad I read this post . I to have a 7 year old son with high functioning autism. I commend you, I go through these feelings, emotions , highs & lows everyday . He is pretty good at school, when he gets to our driveway , I have a child that I can barely recognise. His younger sister bares some of his brunt. She is only 4 , but understands that he is being rude & not nice( her words). I wonder about his future to. But I think he will be ok. I wish he could make friends easier & got invited to parties. He asks why he doesn’t get invited. It breaks my heart. Keep up the great work, you are doing a wonderful job bringing up your beautiful child.

  25. Oh Mel I’m so sorry, totally forgot to credit you for the photo! I feel awful now, and have rectified. Bugger, so so sorry!! xx PS. P absolutely loves your little man too, every time we go to a blog thing the first she asks is if you guys will be there 🙂

  26. I love this photo of your little lady 🙂 She is such a poppet, and Crevette adores her! I don’t think anyone who doesn’t have an autistic child could begin to understand what you guys are going through on a day-to-day basis. xx

  27. Such a beautiful and powerful post. My partner is high functioning and when we started to get serious about our relationship and then found out we were expecting our daughter, his mum armed me with lots of books and information about it. It’s been such a help. It’s helped me to understand his meltdowns, why he acts the way he does sometimes and how he really feels in social situations and why even making the smallest change to routine is a big no, no! She told me about his childhood and so has he, but it’s strange hearing someone else’s experience and it all sounding so familiar. This is going to help so many people and raise such a greater awareness of what it’s like for parents. xxx

  28. You wrote this just for me! Every single point was directed at me at this moment. Thank you from the bottom of my heart xx

  29. Reneé, I’ve finally read the entire post… And wow – 10k shares!!! I can totally see why. Beautifully written and heartbreakingly touching.

    There was so much of this that got me. The juxtaposition of not being invited to parties and the accompanying relief (for you) and sadness (for her). Your worries about the toll life takes on each member of your family, particularly your marriage, must be such an unimaginable burden to carry.

    Reading through the comments, I can see the collective tears of thanks, the en masse dropping to knees of relief that each parent reading this is not imagining things, that they’re not over-reacting. I cannot begin to imagine how empowering, encouraging and comforting your words are for other parents of highly-functioning children with autism.

    And from one mama who isn’t living with the same situation, I want to reflect your words to you and tell you how much admiration I have for you as a mother, a friend and writer. Xxx

  30. Renee, this is so empowering to all moms out there in the same situation. I’m not a mother of an autistic child, but as a previous teacher, I’ve had my share of autistic children in my classroom. I always admire their parents, not for their long patience and strength, but for being able to push through what others say about them and their children. I’ve overheard bouts of “he seems fine to me” and “It’s just a phase…” that their fellow parents say to console his/her concerns regarding their child’s behavior. And their poise and tact to just smile and keep fighting for their children is what admire me day-to-day, and year to year. Those children are lucky to have such dedicated parents, and I only wish others would stash their judgements and simply offer support, and not so much an opinion towards them.

    Thank you for sharing another honest and enlightening peace. I hope that all parentsread this and realize that solace can be found not only in our family and friends, but in each other as well.

  31. Thank you
    I wonder constantly if I am seeing more than what is going on. I have 4 children under 12, 3 of them have high functioning Autism. My family (other than my husband) look at my like I am just making all these behaviors up and they are just being ‘kids’.
    I feel that I should be stronger and not so whiny. Everybody else copes why am I struggling?
    thank you for this letter. I am saving this page to reread when things get hard

  32. From one High Functioning Autistic Mother to another. Thank you for this. Nice to not feel alone sometimes

  33. As the mom of a high functioning autistic 14 year old, your letter was so powerful and touching! I haven’t felt like anyone has understood me and my struggle before, but you knew exactly all of my fears and heartaches. The U.S. Seems so far behind the U.K. when it comes to autism and dyspraxia. I feel like there is no place for us. Thank you for helping me feel like I am not alone and not “crazy.” I was relieved seeing comments from other moms that feel guilty about wishing it wasn’t so invisible so that people would be kinder and more understanding. Even my closest family, including my husband, makes those painful comments you mentioned in your letter. How do I get them to understand? Anyway, what I wanted to say is THANK YOU, 1000 times “thank you” for writing this. It means the world to me at this time.

  34. Thank you for this beautiful piece. I am the mother of a 40-something son who has Asperger’s but was never diagnosed in spite of all the doctors we took him to. Today, after incredible struggles, he has successfully earned a Ph.D. and is teaching at a university. He still has few friends and has never married, but he is reasonably happy. So I’m finally okay with that. But yesterday, my 3-year-old grandson was diagnosed with high-functioning autism. I simply don’t know if I can go through this again. I know the results can be good, but it is such a long slog. Your article helps because I’m sure that I’m not the only second-generation autism mom who feels like she’s starting over…again.

  35. Thank you for this letter. I really feel that it could be written from you to me!
    I am currently fighting for my daughter to be diagnosed & i feel like noone knows how this feels! This was great to read because i am not the only one goimg through all this!!!
    Big thank you xx

  36. It certainly sounds like he’s in the right school for his needs, and if we went into mainstream he would struggle. There is always such a tremendous amount of guilt that comes hand in hand with motherhood, but there really shouldn’t be. You might enjoy this post that I wrote a while back on the subject.

  37. Oh Shaune, the most important thing is that you embraced the truth when you had to, and have become a better person for it. Try not to look back at the past in anger or with regret, right now is what counts. Thanks so much for your honest comment. Did you see this from Rachel @ Autism Awareness?

    “Shaune – We’d love to hear more of your story, if you’d like to share it with our community. Please contact us here or on our FB page
    Content Editor,”

  38. Hi Ruby, did you see Jenny’s reply?

    “We recently had son undertake IQ test to get learning profile for starting school next year. Focus was more on working to sons strengths and engaging him in activities he excels within and building on areas he struggles within. Ie: excellent spatial skills, math skills and poor verbal comprehension. Referred to speech for further assessment and treatment prior to school commencing. Son very visual and responds well to patterns/visual cues which teacher has been told to use visual cues/repetition in addition to verbal instructions. The number was irrelevant in my sons case as he is HF and will be in mainstream class. Hope that helps.”

  39. Oh Rory I’m so sorry that I offended you. My intention wasn’t to exclude the men (I know how hard it is for my husband, and he clearly isn’t alone) but simply I’m talking to the mums because I am a mum… I know that autism dads are doing an equally incredible job. I honestly I don’t think you are being overlooked, it’s just that there are less men being vocal about their struggles. Best wishes to you and your family.

  40. Thanks so much for taking the time to read and write such a powerful comment, just wow! There is so much I want to say about home school, but can’t right now… this post I wrote a while back says a lot of it though. Sending hugs your way x

  41. What a lovely comment and a reminder to us all that among the challenges is pure, heart bursting love. It’s good to know that aren’t alone though, because autism can be a very lonely place. Thank you for stopping by. Hugs xx

  42. Thank you for understanding me. For writing all about me in such a beautiful way. I was certainly not able to share my thoughts like you put them. * Tears*

  43. What a gorgeous comment, thanks so much. I’ve been absolutely overwhelmed by the response to this post, but it has made me feel SO MUCH less alone in my battles and struggles. I’m glad it’s helped others feel the same too. Best wishes x

  44. I felt so much emotion reading this as if it we written about my daughter and I. So beautiful yet so true. The daily emotional roller coaster that we all go through, feeling so alone and alienated at times yet there are others struggling much bigger battles! The guilt is what I have found to be the biggest battle of all. But at the end of everyday my little 8 year old girl seems content, happy and so loved. She has taught me more about patients, life, selflessness and love than any book or person ever could. Thank you for reminding me that I’m not alone! ❤️

  45. Thanks so much for your great comment Jenny, I couldn’t agree more. We are so hard on ourselves, and the pressure we put upon our own shoulders often doesn’t help at all. You might enjoy this post that I wrote a while back. Best wishes x

  46. I’m crying now! It can be such a tough life, and feel truly thankless at points, but please don’t lose hope. You are far from being alone, even if it sometimes feels that way. I am positive that happier times are just around the corner, really hope that tomorrow is a better day for you. Hugs xxx

    PS. This post I wrote a while back might just give you a little bit of hope 🙂

  47. Thank you! I am writing this through a blur of tears so if there are errors, forgive me. Its been a tough afternoon and i feel like im sinking atm but i know i will pick up my baggage and keep moving… tomorrow. But just for right now, it feels like someone out there understands my life!! So thank you!! xoxo

  48. Look, you are right. It’s just that whether they have autistic kids or not mums tend to be so much harder on themselves, set such ridiculously high standards, compare themselves to others all the time to determine their success or failure. Perhaps fathers do too, especially if they are the primary carer, mothers just seem to talk about it more?
    You are doing a great job too Dad! Hang in there.

  49. We recently had son undertake IQ test to get learning profile for starting school next year. Focus was more on working to sons strengths and engaging him in activities he excels within and building on areas he struggles within. Ie: excellent spatial skills, math skills and poor verbal comprehension. Referred to speech for further assessment and treatment prior to school commencing. Son very visual and responds well to patterns/visual cues which teacher has been told to use visual cues/repetition in addition to verbal instructions. The number was irrelevant in my sons case as he is HF and will be in mainstream class. Hope that helps.

  50. Wow! That’s beautifully said. I have a 3 year old mid range ASD boy and it still applies. Thank you for this today. Best of luck on your journey. And to everyone in the comments also. It makes a big difference when you know how many people feel the same way and are facing the same things as you. It’s so easy to feel isolated and alone. Thank you for your words.

  51. This is beautiful. It speaks forbme and others like me on so many levels. I shared it on facebook because it sums up my life perfectly. Thank you and keep going, I am sure you are doing a great job too.

  52. The begining part can be plugged in to address “Dear Mama WITH Autism” …my “brave” face is the face i put on to try and look “normal” infront of other parents because what business do i having children in the first place? The sunglasses i wear to cover up my pained eyes searing under light beams and that causes my skin to burn. My pained expression when im out and about with my child ( not waiting outside of a school because i homeschool) that you noticed is because i am trying to self regulate WHILE helping my child to cope with the same sensations in the midst of judgemental stares, rude comments and gestures. I could apply more, more easily except my fingers are killing me on this phone’s type pad. Autism families are a well kept secret at this point in the USA. We are out there though. This is a good post. It can be used to shed light on what its like helping your child navigate social childhood while having to deal with the phantoms from your own, and even still havent gotten the hang of social interactions yourself. Many parents will look down on you, but remember no one can parent that child like you can

  53. This is beautifully written – so touching and heartfelt, and it speaks to me greatly. However I really feel I must point out – as the father of both a high-functioning autistic son just entering puberty, and a three year old son with marked sensory processing issues – I am saddened to find that this article is ostensibly written only for mums. I don’t mean to call out this author specifically, most writing I find online speaking to parents of children with autism seems to speak only to mothers and very rarely to fathers. I guess I just would hope that within a community striving so hard to make the world more inclusive for their children, that we could be perhaps sometimes more inclusive ourselves. I apologize for the quibble though because this truly is a beautifully written piece.

  54. How does the IQ test help? If its low? What if it turns out high? Does it matter who does the diagnosis and how? Mine has been on file for years from his pediatrician but we have never gone through testing.

  55. spot on. Made me cry to read how i feel so well written & understood by someone else. Makes me feel less alone. Thank you

  56. Wonderfully written and spot on for so many of us mom’s and dad’s too of children low, mid or high functioning.

  57. I am the father of a beautiful little 6 year old girl, she is every dads dream and perfect. Recently, thanks to the persistence of my equally beautiful and talented wife, our daughter has been diagnosed with moderate Aspergers. Her diagnosis would have been much sooner however my ignorance and pride prevented my wife following her instincts and doing the necessary things. Reflecting back, my wife subtly raised the spectre of Aspergers to me on numerous occasions but l typically responded “she’s fine l don’t know what your taking about”. Sadly my comments only served to isolate my wife and forestall my daughters development and her chance at a fulfilling and complete life. I now know what a fool l have been and have embraced the truth …. I will be a better father and husband.

  58. Doubly so on the feeling guilty because he’s high functioning as we are lucky enough to have a place in a special needs school where he is educated alongside children with every disability you could think of. He delights in helping those children though, pushing wheelchairs and patiently understanding their eye movement communication systems, far better than the teachers so I am told by staff.
    I think so often, he should be back in mainstream as he is taking up a place someone else could have, but how can my 10 year old that can’t read or write go to mainstream, how can my 10 year old that cries often throughout the day go to mainstream without other 10 year old boys laughing at him for crying, how can my 10 year old who is just learning self regulation of his meltdowns by having a special safe space in class that he can hide in for as long as he needs to with no one interfering go to mainstream… But he’s high functioning and ‘he doesn’t look autistic’ …. Until he has a really bad motor tic and makes everyone panick

  59. Dear Parents, Please do whatever you can to get an IQ and a diagnosis before they turn 18. It may mean the difference of them being able to get healthcare and social security as an adult.

    Caregiver of an Autistic Person.


  60. Thank you for writing this. This totally describes what I go through, what my daughter goes through, what my family goes through. Sometimes I minimize the trauma of it all. Thanks for reminding me it is HARD and HEART BREAKING and that I need to give myself some love!!

  61. I have to admit that I was hesitant to share too. It almost seems too personal, like I’m laying my soul bare for all to see. You articulate how I feel so very well without ever knowing me. That tells me that I am not alone and knowing that I’m not alone means that lots of us are fighting the fight together. So I’ve pressed share and I’ve commented. Now what…….? Maybe a cup of coffee and a wee cry then face the world again. Thank you. X

  62. Wow! This was so well written, I feel like the author was spying into my life. It’s hard to believe others out there get it, but obviously they do. They are walking on the same path, holding a little hand, and hoping to just keep that child safe in this big noisy, messy world.

  63. this describes me to a t, still no diagnosis, no help from school, refusal to acknowledge by biological father, and constantly worrying about what next wk will bring let alone bigger picture , thank u for sharing x

  64. Thank you so much for for this. I have four kids one was diagnosed with ADHD and my 5 year old daughter and was diagnosed with ADHD and high functioning autism. sometimes I have no idea what I am doing. I keep away from my friends and family BC I sick of their remarks. Since I found out my daughter has autism my friends have kinda forgot that I exist. I sometimes really wish I had someone to just listen to me vent and not judge.

  65. I commented on this as soon as it arrived in my inbox but can’t see my comment now so going to write again because when I read this it felt like such a significant post – you are so honest and brave and it’s amazing how you reach out to other people and make a difference even when you’re having such a tough time yourself. You’re doing an awesome job in such a difficult situation. xxx

  66. This made me cry. Partly because I have several friends who have children with autism but also as an adoptive mum with a child with suspected FASD I relate to so much of this. Also as an older sister with a younger sister who has mental health and behavioural problems I relate to this. Thank you for writing this xx

  67. Hi Renee, I’m not really sure what to write, as sometimes happens (not often though), when I’m caught off guard by a post. I’ve often thought (then kicked myself for having had such a thought) that if my sons autism was more obvious he wouldn’t be looked at like he’s odd/ strange/ weird/ creepy even, which is how he comes across sometimes.

    I’ve often kicked myself for not being on step ahead of the Doctors or managing to get a proper diagnosis before my son was seventeen. On low days I do blame myself for the life struggles he’ll have ahead of him, because I didn’t kick up stink and make people listen until I was at my wits end. I worry that my son will be stuck in his deeply ingrained ways for the rest of his life, not being able to relate to the rest of the world, but so wanting/ needing to.

    I feel guilty sometimes for wanting timeout as he’s my child and I should have been stronger for him and followed my gut instinct instead of fighting it.

    And the silent blame goes on…

    Thank you for your post. xx

  68. This is spot on, especially the parts about feeling like a fraud because he’s high functioning and feeling like I should always be doing more. He’s yet to go through school/not being invited to parties but I can always tell when he gets in from preschool whether he’s heading towards a meltdown (generally he is). Thank you for writing this post; it’s always a message us Aspie mums need to hear. I’ll definitely be sharing this on my Facebook page and Twitter.

  69. I feel like this was written to me, it resonated on so many levels. For us it got harder still as we hit the teenage years. Our family nearly broke over this last year and the professionals who were supposed to be helping had no experience of aspergers and couldn’t relate to our situation. Thankfully, there is a light at the end of the tunnel. You do find a way through but you have to ignore so many people and follow the path that is right for your particular set of circumstances. Fantastic post that I’m sure many people will understand and recognise xx

  70. Reading that was like reading a letter that could have been wrote to me personally, you hit the nail directly on the head with every sentence…..and now i’m in tears – thankyou for putting into words everything that i now know i am not alone in feeling …..just thankyou xxxxx

  71. This is such an amazing post – everyone should read this and be aware of and try to understand what it feels like for parents of autistic children.

  72. Spot on, lovely and I really like the analogy of ‘putting out the fires’ because it’s very much like that. So often it’s not enough though and were faced with a raging inferno and so often it’s like trying to put one out with a bucket of water, with a hole in!
    To see your child totally out of control and in distress is horrible and to have people judging you while this is happening just makes things so much worse. If only they would offer to help instead of making their own minds up about what is happening, things would be so much better.
    I have fears for S’ future because hormones give the most placid of children a hard time so how will it affect him? Then I tell myself to take things a day at a time because life can be hard enough.
    Hearing other people’s experiences helps and listening to fellow autism parents like you lets me know that I’m not as alone as I sometimes feel.
    Good on you for posting this and spreading awareness. Hugs X

  73. Such a powerful post. I’m so sorry you are all going through this, I wish there was something I could do to help. This post will help so many, I hope you will post on Huff too . Sending lots of love, thank you for giving insight into your lives for those who had no real grasp of it xxxx

  74. Thanks so much for your kind words Astrid. They genuinely mean a lot, because it makes me feel that I’m doing something right. I’m sorry you come up again such ignorance. Hugs xx

  75. This is so beautiful! Particularly, I love your understanding of how many autism Mums (and autistic people) face prejudice because they/their child appears to have it together when the ignorant person is present. I still get told I have nothing to complain about because I am (thought of as) “high-functioning”. In truth, while I totally understand “low-functioning” autistics have their own set of problems, at least their disability is visible.

  76. Sending a little e-hug xxx

    I’ve not met you (yet!) but I’m sure you’re doing a great job, not only for your family but also for others going through a similar situation to know that they are not alone.

  77. What an wonderful woman you are, always thinking of others. I cannot possibly imagine the struggles of living with this in your lives. And yet the amazing thing is that your advice is so much further reaching than just those in positions similar to yours…I could do with taking it every now and then. Thinking of you this weekend. Xxx

  78. This is so true – I’m not a mother, but I am a big sister – with seven years difference in age. So I completely get this. But I will be sharing with my mum, as I know this will mean an awful lot to her, who is dealing with ASD at a teenage level, so add a bunch of hormones to the mix! Joy!

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