What to do when your family doesn’t accept autism


“My parents don’t accept that I am (or my child is) autistic. What should I do?”

This question ranks pretty high on the most frequently asked list. We just recently had a discussion about it on Autistic Not Weird’s Facebook page, and I think it’s about time I wrote a full article. (All links open in new windows, by the way.)

Most of us are used to people misunderstanding our autistic selves or relatives, but this is often from people we’re unlikely to see ever again. So what do you do when the lack of acceptance comes from within your own family?

 

Well, here’s my advice, for what it’s worth. This is written for the benefit of both autistic people themselves and their parents.

Before I begin though, I will stress that I almost certainly don’t know your family. As is often the case with these articles, pick and choose the advice that suits you and your situation.

This is Joe

Incidentally, this is Joe from BBC1’s upcoming drama “The A Word”. The drama is set to cover a family with a 5-year-old boy receiving an autism diagnosis, and Christopher Eccleston plays a grandfather character who particularly struggles to make sense of it. It starts on 22nd March at 9pm, I’ve just learned.

Why do some families refuse to accept autism?

So first of all, let’s cover a couple of reasons why autism is overlooked in some families.

1. Generational differences

I often say that in thirty years’ time, autism will be widely accepted beyond a scale that we can comprehend right now. I say this because children are now introduced to difference at a very early age. I worked in a wide variety of schools, and it was surprisingly rare that I came across a class without any children with noticeable additional needs. And in the classes where the children’s neurological differences had been explained appropriately, their classmates were almost universally accepting and wanted to look after them well. (An excellent example of this strategy succeeding can be found in this example from Seriously Not Boring.)

 

Compare that to my generation, who grew up in the 1990s: I met my first noticeably disabled child at the age of ten, and I found it an eye-opening experience. But since I’d gone all through my life without seeing another child like him (he had Down’s Syndrome, by the way), it made me wrongly assume that children with special needs were incredibly rare.

And as for the less visible needs? Well, my dyslexic friends were thought of as stupid. The kids with ADHD were thought of as badly behaved. Kids like me were seen as having a “slightly odd personality”. (And yes, that is a literal quote from a report written about me in 1995.)

 

But I’m only 30. Compare my experiences to generations even further back! I once had a heated discussion with an old-ish man from my chess club, who was shocked and appalled that my school’s nonverbal autistic students wouldn’t call me ‘Mr Bonnello’ or even ‘sir’.

Being naïve, I tried explaining learning difficulties to him- to no avail. And when I told him that forcing words from these students would be somewhere between impossible and damaging, his response was “well it never did us any harm”.

 

He was probably the inspiration for this picture I made.

inmyday

That said, I’m unwilling to tar his whole generation with the same brush. One of my other clubmates, recently retired, is the grandfather of an autistic boy. He is perfectly clued up on what autism is and what it means, and a lack of exposure to autism in his youth has not prevented him one bit from understanding his grandson.

 

So why the difference between these two similar-aged men? I don’t know enough about their past to make any reliable comment, but I do wonder whether the grandfather had a wider variety of life experience as he grew up, or whether he is simply less resistant to the changing culture of our world.

 

Of course, it is tricky to educate people who are set in their ways (who are not always elderly, by the way!)- among those of any age who didn’t grow up with exposure to autism, there are those whose minds are open to change and others that aren’t.

But if it’s any comfort, once our kids grow up I genuinely believe we’ll no longer have this problem (or at the very least, not as much as we have it now).

 

2. Fear of stigma

As long as autism is considered A Bad Thing (which I personally object to, for some reason), there will always be the perception of stigma being attached to it- whether the stigma is real or imaginary.

And sadly, there are too many parents out there who refuse to get their child an autism diagnosis- or any of the support that would help their child- simply because they “don’t want the stigma of having a child with special needs”.

 

There are certain strong words I could use in response to this, but I’ll leave it at “stop being so bloody selfish, get off your backside and get your child the help they need. Because their needs are real with or without the diagnosis, and their support and provision must come before your ego.

 

Sorry, needed to get that out.

As with the previous point, I honestly believe this problem will fade with time. The more accepting the general population is of autism, the less it will be seen by some as a problem that needs concealing.

But for now, the “different, not less” education of the masses needs to continue.

 

3. Not actually knowing what autism is

Some people are still stuck in the days of Rain Man (which was the best thing ever to happen to autism awareness… about thirty years ago).

Some people have got their knowledge from more accurate source material, like the amazing The Curious Incident of the Dog in the Night Time, but based their entire understanding of autism on that one source. And that’s how stereotypes are created.

 

A few years after telling my friends I was autistic, I told them about my job in special education, and one of my friends answered with “really? Some people with autism can’t talk?!”

I would never call this friend ignorant, because of her keenness to learn (which, as I often say, is literally the opposite of ignorance!). But despite that keenness, I became very aware that because I was the only autistic person she knew, I was the source of her whole understanding of it.

So after that, I started talking more about autistic people who were different to me.

A little twist on that "once you've met one person with autism" quote that most of us know.

A little twist on that “once you’ve met one person with autism” quote that so many of us know and love.

So that’s another reason why some family members (or people in general) may not accept the autism in their family. Some don’t deny it through ignorance or shame, but simply because they’re uninformed about the huge variety of autistic people that are out there. For example, if their understanding of autism is ‘nonverbal with severe learning difficulties’, they may not recognise autism in a seven-year-old who can read novels but is intensely uncomfortable with routine change.

 

4. Seeing autism as an ‘excuse’

Yep, we all knew this point was coming. Let’s get it over with.

In my last article, I went to great effort to differentiate between autism being a valid reason and being used as an excuse. There are massively important differences. But unfortunately, to the untrained eye tantrums and meltdowns often look similar. (Just the same as ADHD-driven behaviour looks similar to ‘kids having no discipline’, to people who have no experience in telling the difference.)

Particularly when combined with the last point- when the autistic family member does not match up with the stereotypes- it’s only a hop, skip and a jump to “you’re just using it as an excuse.”

This is very damaging, by the way. Partly because they’re being hurtful to a family member with genuine unrecognised struggles, but also because they might actually convince them. And that could lead to an autistic person growing up to believe they’re defective, which is a dreadful thing (as many of my followers will tell you, having been through it themselves).

 

5. Seeing themselves in the autistic person

I’d like to thank Kirsty from the Facebook community for pointing this out in discussion, because it didn’t actually occur to me. But it’s absolutely true.

I’ve heard from a number of parents who tell a similar story: that they learned about their own autism/Asperger’s while their child was being diagnosed. For many of these parents, they learned something about themselves and felt more able to help their autistic son/daughter afterwards.

But of course, among those who see autism as A Bad Thing, the natural response is resistance. Be aware of this- because if they’re phobic of being autistic and see a lot of themselves in their child (for example), repeatedly telling them their child is autistic could be the equivalent of repeatedly telling them that they’re autistic.

 

6. ‘Positive’ reasons

A little extra note (and sorry for referencing this, Mum and Dad, but trust me).

When I first ‘came out’ to my parents about my Asperger’s, they didn’t believe me.

And why not? Because each of my personal quirks that I referred to as an Asperger’s trait had been interpreted through the years of ‘Chris being Chris’.

 

I came to realise something quite positive. The reason they were doubtful was because they had spent 25 years to that point knowing me as a person. They were reluctant to see my symptoms as being anything other than the Chris they knew and loved growing up. Despite the psychologist interventions and early speech therapy, they had always seen me in terms of my quirky personality and nothing else.

In all fairness, there were plenty of quirks to accept.

And in all fairness, I gave them plenty of personality quirks to accept.

Despite their doubts, they listened to me. And once I explained my reasoning- and the reasoning of my teacher colleagues who had worked it out for themselves (and also my sister, which was handy)- they came to accept that I did have Asperger’s. Since then, they’ve never been anything but supportive.

In fact, Mum recently said to me:

“Actually, given that you faced these challenges as a child- and you didn’t even know where they came from- that actually makes us even prouder of you.”

So it is possible for the doubt to come from positive intentions. And in my personal experience, it’s those people who are more likely to be open to listening and learning.

 

Oh, and I’ll quote a follower here who left this comment in a recent discussion. One of the ‘positive’ reasons for disbelieving is they think the autistic person is brilliant, and they don’t (yet) see how autism can be a non-negative thing.

I’ve had people tell me about my now 8 year old son, “there’s nothing wrong with him” to which I answer, “of course not, but he is Autistic and I expect you to respect that.” Seems to settle things nicely.

-Tracey

 

So what should I do if my family doesn’t believe me?

Well, the reason I wrote all of the above is because it’s the first thing that needs establishing. Why doesn’t the family member believe you?

Do you (or your child) not match the stereotypes? Are they afraid of the stigma? Are their perceptions of autism inaccurate? Are there other family matters at play which may cloud their judgement? More than one of these?

Once you have some idea of their reasons, it may help you work out where to go next.

 

I’m going to present two possible scenarios. Your relative may land somewhere between the two. Honestly, I’d recommend reading both scenarios with equally attention and taking the relevant advice from each.

 

You might be in a position to educate them.

Depending on how receptive your family is (and their reasons for doubting), you may end up being the means by which they learn about autism.

But there’s a way of doing it. And a way of not doing it.

 

I remember being very open about my Christian faith at university (trust me, I’m going somewhere with this). A big bunch of us were, and plenty of us were quite keen on discussing the Gospel. Myself included- surprisingly, given my social awkwardness. And in my time there, I saw how to do it and how not to do it.

Surprisingly, there are parallels with talking about autism to a ‘non-believer’.

 

If, for example, you go to a non-Christian and start talking loudly about the perspicuity of Calvinistic ideals or the specifics of the liturgy of the sacrament or how Jesus was a propitiation for man’s iniquities, don’t be surprised if they lose interest. (Seriously, even other Christians would.)

But talk gently about the basic principles, how they apply to you, and how they impact your perspective on life, and that’s where the learning happens. Even if they don’t agree with you, they often leave the conversation closer to understanding your perspective.

 

Likewise- don’t overload the relative with words, phrases and concepts they’ve never heard of. If you start going ASD, IEP, AAC, ABA, ODD, PDD-NOS, BIP/BMP all over the place, expect confusion rather than understanding. Because, even if they end up believing you, unfamiliar language will not help them understand the person behind the autism.

One of the very first things I ever learned in teaching was “learn where they are, then start where they’re at.” So that would be my advice for teaching anyone about autism: find out what they already know, and go from there.

 

An extra point- generally speaking, people trust the word of professional psychiatrists. And even if they don’t, sentences beginning with “the doctor says…” usually carry more weight than “I think…”

So, if you or your child has the backing of a qualified doctor, quote them. If there’s a printed report, offer them a glance.

Especially if their doctor looks like this. Then they have to believe it. Peter Capaldi's eyebrows demand it.

Especially if their doctor looks like this. Then they have to believe it. Peter Capaldi’s eyebrows demand it.

 

But they might be completely closed to discussion.

Sadly, it might be the case that your relative is closed to all conversation about the subject.

And if that’s the case, there’s little you can do about it. We can try being positive influences over people, but one thing we can never do is make other people’s choices for them.

 

So if they choose to not accept autism in their family, for whatever reason, how do you help them to understand you or your child?

My immediate advice is to keep talking about the struggles, but talk about them in non-autistic terms.

For example, maybe:

I’m struggling because the music’s too loud.

Is more likely to have a positive impact than:

I’m struggling to concentrate because my autism makes me sensitive to noise.

 

I know how ugly it sounds, cutting autism out of the sentence. Especially if it’s a major part of your (or your child’s) identity. But this strategy does get the other person closer to understanding the autistic family member and their needs. In certain cases it’s better to concentrate solely on helping them to understand the person, and leave the ‘autism battle’ for another day.

And again- whether or not you mention autism- quote the details from the professionals. If you have the backing of a psychiatrist, use it where you can.

 

Finally, I’m going to offer the “you’re not alone” advice again.

Seriously, right from starting Autistic Not Weird this was a surprisingly common question. And as isolating as autism often feels, I hope you’re able to see that there are plenty of other people out there who share your frustrations. Finding and talking to these people can be quite therapeutic, as well as a chance to learn how to deal with it. (If you’re not already in ANW’s Facebook community, you’ll find plenty of these people there.)

alone

As frustrating as it is when you have to endure those who don’t accept autism, it’s important to focus on socialising with people who do accept it!

 

And to finish, the usual bullet-point list:

  • Establish why they don’t believe you/your child has autism.
  • If they’re comfortable with discussing the subject, pitch your conversation at their current understanding.
  • If you have the backing of a professional, quote the professional.
  • If they won’t talk about autism, talk about the struggles without mentioning the diagnosis.
  • You are not alone in not being believed. But the tide is turning in the right direction. I promise.

 

I hope this helps some of you.

Chris Bonnello / Captain Quirk

Chris Bonnello is an autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).

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Picture credits:

http://www.theguardian.com/tv-and-radio/2016/mar/09/the-a-word-autism-funnier-than-this-tv-drama

http://screenrant.com/doctor-who-reason-why-christopher-eccleston-left-season-2/

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14 Comments

  1. I’m so happy with this article! My stepmother refuses to believe that I have Asperger’s, and often tells me that I should not be ‘exaggerating’ and ‘act natural’. She doesn’t believe that certain noises can bother me and others can’t.
    I believe this is because she had two sons who were affected quite differently than I am (and I’m a girl). Also, they had learning diffuculties like dyslexia and dyscalculia and I don’t. I hope I can make her understand I’m not faking my symptoms.

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  2. I was 26 when i was diagnosed with Aspergers, my parents had a tough time accepting it. My dad saw me as a strong and intellegent person, it was painful for him to see me break down. My mom was different she had a tough time accepting that she might have overlooked my problems that i might have suffered alone. My dad realised i hadn’t changed even if there were times where i broke down. The reason why i never realised i was “different” as a child was because everyone accepted that i was, and even though i was teased at school it didn’t touch me, because i was never kept out, one of the big reasons i had a good childhood was my parents not trying to change me. This was also the reason my mom never realised that i might have problems b/c as a child i didn’t. In my teens the different between me and everyone else began to shine through and actually cause trouble. My parents tried to help me, tried to teach me how i should behave, the did it because they wanted to help me but they didn’t know that they were denying the real me, and i started to suffer, i blamed my parents and everyone else for not understanding me, i tried to make them see, i became aggressive and startet to think about selfhurting and death. My mom watch as i broke down and she couldn’t take it, she rose up as a lioness protecting her cub. The school blamed my parents, my parents blamed the school because i blamed the school. For the next about 3 years noone other that my parents seemed to listen to me it made me so mad that i decided to find out what was wrong with me, it lasted 10 years, trying to be normal while trying to ease the suffering. It ended with me stopping to live, i was 25 years old i had wasted 10 years of my life, because noone listened to me, and everything around me just started to break down and then i stopped eating or get out of bed, after 2 weeks i contacted my parents i told them that i couldn’t take it anymore, that i needed help. And for the first time in my life i got the help i needed, and a year later i was told i wasn’t wrong, and that it was okay to be different, i finally found my explaination. My parents has already accepted that i have Aspergers, though they still believe i use it as an excuse, but to me it is different for so many years i seach for an explaination because noone seemed to understand me when i was young, i finally found that explaination but i don’t know how else to explain what happens to me other than using “I have Aspergers”. I told them it made me sad when they told me i was using it as an excuse, so they stopped saying it, so that is a step in the right direction.

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    • Thanks for sharing your story. I really hope things are better for you now than they have been in the past.

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  3. Thankfully, I never really had to deal with family being hard on accepting my Aspergers…much. There were instances where my step father would say ‘don’t use your disability as a crutch’ and I understood the intention behind this phrase, but it irritated me to no end. My mother was infuriated every time he’d say that, and this was a woman who was studying for her Masters Degree in Special Education at the time. I think it also left enough of an impact on me where I doubt whether or not a struggle I have is related to my Aspergers or not. This is something I’m sorting out with therapy thankfully.

    I think what’s been slightly harder for me is trying to explain to my peers about my Aspergers. Some have been completely accepting of it, but others seem to struggle harder with it, even as much as I have written about it here – http://jc303.tumblr.com/post/133539354304/blog-30-autism

    I feel like I’ve completely laid everything out in the open as much as I could and tried as best as I could to make it more easy to understand, but I get the feeling that there’s this feeling of people just simply not wanting to understand, which in turn makes it more difficult for them to understand. It’s new, different, and unpredictable, and therefore, they don’t bother because ironically its overwhelming for them to wrap their head around.

    I know there’s not really much I can do and its up to the other person to truly decide if they want to put effort into understanding or not, but I can’t help but feel slightly frustrated at the lengths I have gone to, to explain to people how this works, and it’s somehow just not getting through. It sounds somewhat selfish to express this frustration but I have had to be my own advocate ever since my mother passed away back in 2011, and I’m finding out more and more how difficult it can be for people to understand, or the fact that some people just want to deny some ideas or facts about this.

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  4. unfortunately it’s one of my adult children who has asked me not to speak about having aspergers. I’ve moved from being happy and relieved at having a late diagnosis to feeling like I’m not acceptable yet again. It’s causing me a lot of heartache.

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  5. The Chris being Chris bit made me chuckle because that’s how my Nan reacted the first times I tried to tell her. It’s just “Hayley being Hayley” also she is on the spectrum with me according to the psychiatrist and I’m like “eighth” we live together. Thank you for the list, it cheered me up.

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  6. Some great ones from my family:
    “She can’t be autistic; she can read and write!”
    “She goes on holiday and stays in hotels; how can she be autistic?”
    “I know two boys who are autistic, and she is the complete opposite of both of them. One shouts all the time, and the other one doesn’t talk at all.” (Which begs the question: how can I be opposite to both ends of a spectrum?)

    I was finally diagnosed with autism yesterday at the age of 34. I was lucky in that my mother works in special education, and recognised a lot of Asperger traits in me that she was taught to recognise in her students. Yet when she mentioned this to her sisters, they didn’t believe her and thought she was making it up and looking at things that weren’t there. When she told them I had in fact been diagnosed with autism, they were in disbelief.

    A message to my lovely aunties: You don’t live with me every day. You don’t see or understand the struggles I go through. When I’m with you, I am faking social interaction so hard because I’ve had to, in order not to be the black sheep of the family. Yet, I still am. If you would just talk to me more often rather than just commenting your disapproval every time I post something negative on Facebook, maybe you would understand me a bit better. Can’t you let me have my peace that I finally have an answer to why I am the way I am, instead of just seeing me as “the weird kid”? Read the information available to you about autism,instead of looking at your stereotypes. That’s all I ask.

    Pardon the rant, everyone. This is going to take some getting over…

    Post a Reply
  7. You missed out one reason for not accepting your own child’s autism, which is “you’re only doing this to be unkind to me and to disrespect the DNA I gave you.”

    This is the one my mother uses to dismiss my autism, even though she has 6 grandchildren as well as a grown-up daughter on the spectrum.

    Post a Reply
    • I’m sorry you’re dealing with that. I can relate in that my father refuses to believe he passed autism down to my brother and I, and my mother simply “hates labels” even though I’ve found liberation and a whole mess of coping techniques in my official diagnosis.

      Disclaimer: I’m diagnosed ADHD but strongly suspect a comorbidity of high functioning autism. My brother shows many of the classic signs of autism in that he is incredibly invested in his hobbies (which I am sure he will make a fine career out of), has been known to my family as being “rigid”, a very intense person and all sorts of quirky personality traits that make him a really neat individual. But he has never been diagnosed and I’m sure he must feel confused and out of place thinking he is so different and not understanding why or what strengths come with that.

      I for one enjoy being something other than neurotypical. NT seems so boring and uninteresting 🙂

      Best of luck to you!

      Post a Reply
  8. I’m 15 and i’ve been suspecting that i have Aspergers for some time now but due to my mother claiming i was just a difficult child and using therapy as a tool to get me to stop. She always said stuff like “if you don’t stop biting yourself imma take you to the special doctor” and it terrified me as a child. Of course I ended up just learning to hide my struggles but it wasn’t until I asked her why she never did bring me to anyone and she said she didn’t want me to feel crazy and that it would ‘look bad’. When I thought this was just some kind of anxiety she said it was in my head. Now I’m still the same as i’ve always been and I don’t know if she’ll ever understand or bring me to somebody who isn’t going to tell me that I’m broken or sick. I’m still insecure and scared to tell anybody besides my best friend Taylor who has an anxiety disorder and also has parents who don’t think that’s a real thing. I hope one day i can be more confident about this. This website is truly helpful though. I wish the days are kind to you 🙂

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  9. Hi I am one of you of many and we struggle as one but the feeling one feels lonely holding on to another person feels empty like you’re hugging a mannequin stuffed animal are simply air hard to give someone love when it is not equal feeling justin.wright7932@gmail.com

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  10. My mother had a difficult time accepting my Asperger’s diagnosis in 2002. I think she’s come around some, but I don’t discuss iw with her.

    I bet if I told my psychotic, gaslighting high school classmates, they would dismiss it as an excuse to be “weird”. They refused to be nice to me or accept me, even as I begged, pleaded, etc…

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  11. How do you know autism is a spectrum disorder? What evidence is there to prove this beyond all reasonable doubt?

    Post a Reply
  12. I am Indian and come from a some what traditional Indian up bringing and trying to explain my sons difficulties to my family is very difficult. At first they almost pretend to listen and understand and then when he does something that they dont agree with, it fast turns into a battle of good and bad parenting. I could tell them until im blue in the face, why he did what he did and for them to see things from his perspective, but no! it becomes even more challenging when his behaviour effects my niece or nephew, he is then seen as a bully and someone who doesnt care about other children and their feelings. it is so frustrating because then he starts feeling like an outsider and with a negative label attach to him. As a result I have stopped talking to some of my family, if they cant accept him and his way of thinking then I have no room for them in my life. I will not make excuses for him as i believe he doesn’t require them. his an amazing child and if they cant see that, well its there loss!! I do believe the Indian community needs to be educated on such issues for children to grow up with a better understanding of them selves, thus encouraging self acceptance and self worth.

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