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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To lose friends & family re autistic child

93 replies

MumBlingAgain · 25/06/2025 20:10

This may end up being long so please bear with me.
One of my daughters is autistic. Spoke "on time" and fluently but early on we noticed behaviours which pushed us to seek a diagnosis.
It was new and worrying for me so I confided in a couple of friends and family members. Reactions varied from:

  • my sibling: "everyone has a different personality, nothing is "wrong" with your child, she just has such and such personality traits" (Note: I never said something was wrong with my child, just that she was autistic!)
  • my closest cousin: "your child is not autistic, that's such an overused label these days, your child is fine, they are sociable and smart" (Note: the diagnosis was carried out by qualified medical professionals).
  • another friend treating it as if it was a cancer diagnosis (At least she didn't try to tell me what my daughter is and is not!) a couple of other friends have just asked a question or two then gone very quiet and I get the feeling they think I'm crazy.
  • my parents initially suggested I should see a psychologist for being "so anxious" and that my parenting was to blame for my child's emotions. My mother was adamant my child was smart, capable and "normal" (I hate that word so much by now!) until she spent the day with some distant cousins who have a neurotypical daughter the same age. She called me the same week urging me to seek help for my daughter and has been educating herself ever since and of course "accepted" the diagnosis when it came. Which of course is commendable (the educating herself bit) but I still feel bitter about how it came about.
  • I should also mention that I have a couple of wonderful mum friends who have just listened and continue to treat my child in exactly the same way since I shared with them, which has taught me to be choosy about who I share with

Now my mother wants to tell everyone about the diagnosis and I have asked her not to. She is claiming I am not helping my child by being "secretive" and is suggesting I am "making my daughter's autism a problem when I should be celebrating her differences".

Great sentiment. 😂, but the reactions so far make me feel like I can't trust my family to behave appropriately in front of my child. She is still young (only 5) and unequipped to deal with prejudice. I don't want an inconsiderate adult mouthing off in front of her with "oh, don't cry Freddy, your cousin hit you because she doesn't understand your feelings / doesn't know better".
Even worse if children from the family overhear ignorant statements and repeat them.

So I guess my post is to ask: WIBU to reduce contact with my otherwise lovely family because I feel so bitter about their reactions (either denial or as if it's some problem with my daughter's personality!) and I want to protect my child from their ignorance?
My family are usually lovely and they probably think they are the best and most supportive but I just feel so sad about their reaction.

OP posts:
Iwantsandybeachesandgoodfood · 25/06/2025 23:21

MumBlingAgain · 25/06/2025 23:08

I completely agree with you!
My daughter is 5.
We have found that she does respond to being disciplined but using different approaches than her siblings - e.g. remove her from situations where she may be lashing out inappropriately and wait / support her until she has regained control of her emotions before expecting her to apologise.
We see progress in her behaviour over time, it's just more challenging to get there as we are constantly adjusting and calibrating our own behaviour.

Sounds like you’re doing a great job and you’re right, as parents we constantly have to adapt to them. We learn and grow too. My ND child is a preteen and my entire parenting experience has been totally different to my other child. We have to be led by them.

MumBlingAgain · 25/06/2025 23:30

lovemetomybones · 25/06/2025 22:05

Ok I am in this very same situation. My son is globally delayed in all areas, non verbal and autistic, has deep pressure issues so struggles with spatial awareness and is incontinent. He is also tiny 2% percentile. As a result of this, most treat him as if he’s a baby not the 4 year old he is.

going through diagnosis I have been told I’m negatively labelling him, there’s nothing wrong with him, he will catch up, im being too negative. They absolutely are dismissive, undermining and unsupportive. Despite this I do get it, they don’t want to entertain it because they want him to be perfect, it’s easier to bury their heads in the sand than to face the truth.

It’s so hard, but they only see a snippet of what you do, it’s easy to be dismissive. But perseverance is the key. Eventually when official diagnoses came in, as he got to the point where he should start school but he was in nappies, not only non verbal but had no cognitive abilities to understand the basic communication skills, had no ability to mix socially they began to change their view. It also took an incident where they were looking after him and he ran into the road because they over estimated his awareness of dangers, it took a council fight when the council refused to defer him and I had to fight. It took 90 pages of documentation from professionals, from myself, it took agreement from the nursery and the school before they began to change their mind.

did I get an apology? No. Does my son now have a supportive family behind him that understand his needs? Yes.

sadly society, the government are just not geared towards accepting disabilities that are invisible. But don’t give in and don’t hide away your child needs a village, you need a village. I’ve never fought so hard for anything as I have for my son. Fought to understand his difficulties, to get diagnosis, to grieve the loss of an ideal life, to do the day to day, to document (pages and pages hours upon hours) of forms and questions, to engage with professionals, to make family, friends understand, to fight to get an EHCP, to fight the SEND services in my area who didn’t have my sons interests at heart, to take the council to tribunal, to engage with solicitors, then if that isn’t enough to be a mother to three other children and work a stressful job.

it’s utterly exhausting but my son deserves a good life and I will not accept anything less.

I absolutely feel for you and your situation. All I can say is continue what you are doing, never give in. X

Wow, you sound like an amazing mother who has given her all to make things happen for your child.
Makes me realise how selfish I would be to give up on a supportive family just because they don't get it yet...
Thank you, and thanks to everyone else who posted tonight.
i think I was just feeling particularly down and needed reminding about why I still need to keep the fight going. Family is worth keeping and I would give a lot to ensure my daughter is well surrounded.

Mumsnet as always an infinite source of wisdom :)

thanks and good night to you all!

OP posts:
MumBlingAgain · 25/06/2025 23:36

Maybe one last post to thank also those who shared how they were not able to maintain a close relationship with family.
I really feel for you and can see how it often gets to that point. I also feel immensely sad when those closest to me seem to almost refuse to engage with understanding my child.

For now, I will keep trying to build that awareness - unless I one day feel, like you do, that it's not working for my daughter and she benefits more from taking distance. I don't think we're there yet.

good night ❤️

OP posts:
Ohtobemycat · 25/06/2025 23:53

We have adhd and autism children.
Family do not understand/believe that it a real thing/can't look after our children. Apparently, I am too soft.
I just let them be, slowly drip feed information.
Funny enough I think said family members are neurodiverse now..
They are coming round, starting to understand. Its taken several years, but they never stopoed loving us, just really had zero experience and preconcieved ideas and so its a steep learning curve but they can get there.

BeNavyCrab · 26/06/2025 00:18

Having a new diagnosis can be a period of adjustment for everyone in the family and people say some things through ignorance or in a way that they don't manage to convey their meaning. My oldest has an auditory processing disorder and particularly grand parents struggled to understand that it wasn't deafness because that's the only thing they were aware of. They spent a long time trying to "disprove" the diagnosis and assure us "he was ok" because they wanted to reassure us. At the time it felt like they were trying to minimise his problems and were working against us. It took a long time of experience and explaining why things were like they were and how they needed to behave, so they could make it easier for him to understand them. Our second child is autistic and there are seven other cousins with different disabilities or genetic conditions. For each of them it required education about the difficulties or ways of supporting them to other family members and not everyone "got it" at the start. Sadly some people still say stupid things and need correcting or if they won't be reasonable, you have to limit contact. Ideally having more family in their lives is better though, even if you sometimes have to explain to your child why granny said something hurtful.

It's normal to feel a little bit defensive and protective for your child, especially at the start. Try not to read in to others remarks but equally challenge things that are unreasonable or damaging. Your child isn't old enough to consent to who knows their medical records, so other than where it's necessary like school, I would be firm with your family that it's not for them to share it.

Each child is different and we have found it's better to explain what someone can do that's helpful to them. Rather than say they are autistic, because there's so much ignorance or misunderstanding, especially for a girl with autism. There's also people who "know what to do with an autistic child", who have been absolutely wrong for my daughter. So it's much more helpful to spell out the things she found difficult, why she was behaving the way she was and exactly how they should respond to it.

There's going to be battles ahead and you are going to have to spell things out time and time again. For example I can't tell you the number of times I had to tell teachers that they needed to turn around and face my son so he could see their lips, if they wanted him to answer a question, after they had complained he wouldn't when they were writing things on the whiteboard. Even though they knew he used lip-reading to be able to understand what they were saying. Or explain why my child won't sit on a certain seat because she can't bear that texture. Things that seem obvious and logical to you, aren't always to others and you sometimes have to fight for them incredibly hard as a previous poster @lovemetomybones said. So having family and friends around you can help with the drain and stress of challenging status quo/ authorities.

Ablondiebutagoody · 26/06/2025 00:26

People don't understand autism which isn't as outrageous as you are making out. Why pick these fights?

Caligirl80 · 26/06/2025 00:58

There is a lot of misinformation out there about autism. There is no "one size fits all" with a diagnosis of a medical condition that is known as a spectrum disorder and has all manner of different presentations. Sadly vast numbers of the population are ignorant about most things - and chose to remain so - so it's not surprising that you are encountering ignorance about autism in your family.

I would suggest you ask your daughter's doctors/therapists for suggestions of an excellent introduction to autism book (I hate to say it, but you want whatever is the "autism for dummies" text...just with a kinder title). Hopefully it's a book or online-based guide that is relatively inexpensive or free. You could, if finances permit, buy a few copies of that book (once you've read it yourself of course) and give them to your close family members (mum, sisters etc) so they have a common source of information/guide that they can refer to that you agree explains autism well. Share this information at a time when moods are not fractious and unpleasant. Accompany the book (or if you aren't able to buy books then share a link to the book, or an online version of whatever information you want them to read) with a note that is kind, open, and says something along the lines of the fact that the diagnosis was a surprise to you and understandably a surprise to them, that you've had to learn a ton about autism and are still learning, and that you've come to understand that there are lots of different ways it can present.

You might feel comfortable listing (kindly!!) a few ways in general that autism may present (don't make it specific to your daughter - that could be rather unkind if she is in a position in future whereby she can read that letter and her situation is changed). So: in terms of the "touching" issue: children may not understand social boundaries and cues when it comes to physical contact. They may reject contact that is seen as normal (shaking hands, friendly family greetings like hugs), or may misunderstand social norms and initiate greeting-type contacts too often because they cannot read body language cues telling them that the other person is uncomfortable (for example, hugging during play, or using physical gestures because they have difficulty verbally communicating how they feel). Etc etc.

Many people assume that autistic people LOATHE physical contact because that's what they have seen in movies - but of course that's not real life. For example, many people assume that "Rain Man" is an accurate movie about how autistic people behave: but the Dustin Hoffman character in that movie is based on a real life gentleman called "Kim Peek" - who was thought at the time to be an autistic savant, but is these days thought to actually have had "FG Syndrome". The point being: people who have autism are NOT all like Kim Peek, in fact it's difficult to find many people at all who are like Kim Peek (he had a number of developmental differences in the way his brain developed, for example he lacked the typical connections between the right and left side of his brain. He had the amazing ability to read both pages of an open book at once; the left eye would scan the left page, while the right eye would read the right...this is, of course, not at all typical of a person with autism!).

You may also find that various of the Autism support charities already have these kinds of guides and "how to talk to your family/friends" documents that are pre-written for you - so take some time and search them out, and make them available to people you think will have contact with your child. It will give you a common frame of reference. You can, of course, just ask people what they think autism means and what they think of when they think of an autistic person. The point with that is not to play "gotcha" or to make those people think they are stupid or uninformed, but to assist you in understanding where there may be differences in understanding.

You may also want to ask your child's teachers/educators (you say she's 5 so presumably she either has had kindergarten teachers already, or you are preparing for her to attend primary school) if they have they have SENS information and guidance that may be useful. They often have to explain what autism is to other students when an autistic child is in the same class. And they will have strategies for how to manage children who have differing understandings of social norms/behaviours/cues etc etc - including the "touching" issue that seems to be causing the most angst at the moment for you and your family.

Hopefully this all gets better with time and with people in your family and friend circle taking the time to educate themselves. If they care about you and your child they should want to do that, but people have their own busy lives and difficulties so it's important to make that process as drama free and accessible/easy as possible. And be open if they have questions and forgiving if they get things wrong or are awkward about how they ask. It is very difficult to know what to say and how to behave when someone shares information like that - because they don't know how you feel about the situation either (and you're still figuring that out yourself), so there is a certain amount of eggshell treading and uncertainty all round.

If you haven't already I would certainly urge you to seek out therapy yourself to help you cope with your child's diagnosis and behaviours. Frankly I think everyone benefits from therapy and learning more about themselves and how the interact with the world, so please do not view this as a negative thing. I would also urge you to seek out talking therapy for your autistic child and any other children you may have - it's helpful all round.

Caligirl80 · 26/06/2025 01:09

WaveChaser · 25/06/2025 20:42

I feel for you. My daughter is very verbal but her autism effects her hugely- my inlaws told us there is no such thing as autism, we are just bad parents.

They do probably see your child struggles but it's easy to blind to the things you don't want to accept.

So sorry that your in-laws are ignorant nitwits. I'm sure you've tried, but an email with documents from the NHS, and the British Medical Association, together with the DSM-5 criteria may be called for. Autism exists: your in-laws likely wouldn't tell a person with Type 1 Diabetes that they don't have diabetes, so telling your child that they don't have autism is obnoxious and unpleasant. Hopefully some of the Autism support groups can give you some coping strategies for how to deal with the "autism deniers" out there. Particularly some talking points for the claim that it's "bad parenting." I hope you don't have to interact with those morons anymore.

CuriousKiteFlyer · 26/06/2025 02:15

My DD 15 has been referred for a private ASD assessment after seeing a psychologist due to school refusal. I always thought her issue was more extreme social anxiety. She doesn't display any obvious autistic traits when in the company of people she knows well. I'm concerned that she is going to be misdiagnosed. In your experience do autistic traits come and go depending on the situation the child is in or are they more consistent? Also if anyone knows, how do you distinguish between acute social anxiety and autism?
Thank you

MumChp · 26/06/2025 02:35

Many neurodivergent people do not make much of an effort to understand neurotypical peoples needs.

There is a high expectation today that neurotypicals take neurodivergents' needs into account first, second and last. But not a lot of understanding the other way around.

We have children and adults with autism in my family and friend circle and always had. Runs in the family. Our dc3 is most likely Asperger. Placed on a waiting list.

We have started to step down seing quite a few of the neurodivergent
people around us. They are all very knowledgeable about their needs. What we should do for them in terms of consideration and how we need to help them out.
They are very attentive and articulate but completely not interested in others' need. For example my needs as a chronic pain patient with foood allergies are completely neglected.

It is incredibly tiring to stand up for someone when there is very little way of showing the slightest understanding that the rest of us also have challenges.

I am aware that this is part of the diagnosis and of course not all neurodivergent people acts like this. We might be very unlucky with our neurodivergent friends and family members but I have heard other neurotypical tell me the same story.

I have realised that we can't always be responsible for all the adjustments at the expense of ourselves and our childrens' needs and have started to step down.

We had dinner with a family member this night and a few other friends. At her favorite restaurant. Again. Food has to be vegan and gluten free and she will not settle for a salad at a regular restaurant. Because she has rights to be treated well and have a great meal. Besides there must be no noise and and and....
My food allergies are secondary in this game. As a non neurodivergent person I just have to adapt and be happy to have a salad or a weird rice dish.

The menu at her restaurant is food that we really don't fancy. The chef caters well for her. It's a small ethnic cuisine. She's not really interested in understanding that the food isn't for everyone or adaptiv to another restaurant with a broader menu. She's very well educated and well spoken.

It's been a year since we've been dining out with her and it'll be another or two before doing it again.
She often reminds me that she knows we're going out with other friends and family members for dinner more often than her and invite people over for tea - and I am left with the feeling "No shit, Sherlock!". I just spent £100 on food we don't fancy to spent a night with her.

Understanding probably goes both ways but it can be very hard work tbh and I often fell that the neurotypical are the one called now out even if you are trying hard to accomondate people suffering of autism.

SheridansPortSalut · 26/06/2025 02:45

"My family are usually lovely and they probably think they are the best and most supportive but I just feel so sad about their reaction."

Ok, so they got it wrong on this occasion. If they're usually lovely then it's reasonable to assume that their intentions are good. Don't cut your nose off to spite your face. Your going to need them.

Also, your mother is right.

Robinredd · 26/06/2025 03:08

I've felt my daughter was autistic from very early on. She met pretty much all of her milestones but some on late side of normal. I don't even talk about it with anyone these days because I know they think I'm delusional. Even my DH did up until very recently.

Only last week the HV came out to do my youngests one year review and she was also monitoring my 3 year old and said 'I think maybe it's time to do that referral'. We'd been waiting to see what was the opinion of speech and language but we've still not got an appointment.

My friends and family are largely fantastic and supportive. I think some people just have a rigid view of what autism looks like. Even my best friend has a child the same age as mine. The differences between them are worlds apart but my friend still thinks my daughter probably just needs time to catch up.

I have several friends who have autistic children and they've understood from the get go.

Obviously this doesn't mean I think you should let people speak about your daughter ignorantly or unkindly. I just mean to give people some time to understand the diagnosis too.

Caligirl80 · 26/06/2025 03:46

CuriousKiteFlyer · 26/06/2025 02:15

My DD 15 has been referred for a private ASD assessment after seeing a psychologist due to school refusal. I always thought her issue was more extreme social anxiety. She doesn't display any obvious autistic traits when in the company of people she knows well. I'm concerned that she is going to be misdiagnosed. In your experience do autistic traits come and go depending on the situation the child is in or are they more consistent? Also if anyone knows, how do you distinguish between acute social anxiety and autism?
Thank you

Edited

There are LOADS of guidance books/materials out there that can help you to understand these things. Even a simple Google search for "difference between autism and social anxiety" returns vast amounts of information - why not start there? Autism is a neurodevelopmental disorder - and one of the symptoms can be (though isn't necessarily) social anxiety. Social anxiety is not, by itself, a neurodevelopmental disorder. Plenty of people have social anxiety and they have it for a variety of different reasons (for example, some people may have social anxiety after experiencing a traumatic event that causes PTSD...so in that scenario it is possible that CBT/anti-anxiety meds may help to support the person in question with their social anxiety, and the person may be able to be successfully treated and move on. By contrast, autism isn't caused by a single traumatic event.
It could, of course, also be the case that a person could be autistic and could also have social anxiety. So, the social anxiety may or may not be attributable to the autism.

It sounds like your child is going to be meeting with specialists - so ask them what the differences are between the two diagnoses, and what they are looking for to determine whether a child has autism, social anxiety, or both. If you already have the referral then contact that organisation/specialist and ask them for guidance materials directly.

There are a number of autism support charities and organisations that can likely help you with your diagnostic questions. The UK ones are easy enough to find - do a general Google search and spend some time doing some of your own research.

The NHS has various online information about autism and various other mental health diagnoses.

Note that a lot of online resources that are US in nature may refer to the "DSM-5" diagnostic criteria. These are certainly very useful, and are influential, but clinical diagnosis in the UK does not tend to be DSM-5 based. So it's important to understand that some of the things you may read online or in books that have a US-influence might be somewhat different in terms of focus/terminology than what you may hear/discuss with UK based practitioners and medical specialists.

Hopefully your child is getting the care and support they need for their social anxiety while you wait for the diagnostic meeting with the specialists. Social anxiety can be utterly crippling so it's important that treatment happen in the interim. Hopefully your child is still receiving talking therapy so they can discuss their worries with a trusted therapist who can give them coping skills. You may also wish to examine your own social interactions and how you cope with them to understand whether your child is mirroring any anxieties they see you displaying. For example, children who have parents who are constantly fretting about getting to places on time, or what to wear to events, or what people may think of them, or societal expectations etc etc may find their children are taking on some of those worries themselves. You may also want to consider whether the social anxiety began all of a sudden after an identifiable stressful event, or only happens in certain social situations (i.e. only at school).

There are plenty of peer-reviewed books/articles and other guides that you can research online/borrow from the library/ask the specialists for pointers towards. I would be wary about relying on anecdotal stories from online forums like this one.

MammyofaSuperBaby1993 · 26/06/2025 03:48

I've always been open and honest about my dcs difficulties and successes as a child with autism and ADHD among other things and I've lost a lot of friends and family due to them not understanding, not caring or even them not coping with the fact he's different.
However in return we are surrounded by people who adore my ds and support us whole heartedly. This circle isn't very big and now includes other parents with Nd children but they've told me that by being honest I created a safe space for my ds to be himself and for him to be understood as a person before his disabilities and I've included their children in this space too.
Plus I need the space to be able to talk candidly about the realities of raising a Nd child and recive support for myself too. I have no time for people who treat us badly

Caligirl80 · 26/06/2025 04:18

MumChp · 26/06/2025 02:35

Many neurodivergent people do not make much of an effort to understand neurotypical peoples needs.

There is a high expectation today that neurotypicals take neurodivergents' needs into account first, second and last. But not a lot of understanding the other way around.

We have children and adults with autism in my family and friend circle and always had. Runs in the family. Our dc3 is most likely Asperger. Placed on a waiting list.

We have started to step down seing quite a few of the neurodivergent
people around us. They are all very knowledgeable about their needs. What we should do for them in terms of consideration and how we need to help them out.
They are very attentive and articulate but completely not interested in others' need. For example my needs as a chronic pain patient with foood allergies are completely neglected.

It is incredibly tiring to stand up for someone when there is very little way of showing the slightest understanding that the rest of us also have challenges.

I am aware that this is part of the diagnosis and of course not all neurodivergent people acts like this. We might be very unlucky with our neurodivergent friends and family members but I have heard other neurotypical tell me the same story.

I have realised that we can't always be responsible for all the adjustments at the expense of ourselves and our childrens' needs and have started to step down.

We had dinner with a family member this night and a few other friends. At her favorite restaurant. Again. Food has to be vegan and gluten free and she will not settle for a salad at a regular restaurant. Because she has rights to be treated well and have a great meal. Besides there must be no noise and and and....
My food allergies are secondary in this game. As a non neurodivergent person I just have to adapt and be happy to have a salad or a weird rice dish.

The menu at her restaurant is food that we really don't fancy. The chef caters well for her. It's a small ethnic cuisine. She's not really interested in understanding that the food isn't for everyone or adaptiv to another restaurant with a broader menu. She's very well educated and well spoken.

It's been a year since we've been dining out with her and it'll be another or two before doing it again.
She often reminds me that she knows we're going out with other friends and family members for dinner more often than her and invite people over for tea - and I am left with the feeling "No shit, Sherlock!". I just spent £100 on food we don't fancy to spent a night with her.

Understanding probably goes both ways but it can be very hard work tbh and I often fell that the neurotypical are the one called now out even if you are trying hard to accomondate people suffering of autism.

Edited

Your post seems like it belongs in a different place. This is a discussion about how a family/mum is dealing with a new diagnosis of a 5 year old child. Your personal grievance about your interactions with an adult who is neurodivergent is not really relevant here, and certainly isn't particularly helpful. A 5 year old child is not responsible for how adults treat them or interact with them. Unclear why you think your experience with a neurodivergent adult who has food preferences has any bearing on this discussion. Maybe make a better effort to understand the nature of the discussion before adding your own personal problems in future?? Ironically your inability to "read the room" and adjust your discussion input to be relevant to the topic of conversation rather suggests that you yourself may have difficulty understanding the needs of others. In this case you seem to not be able to have made an effort to understand the needs of a mum of a newly diagnosed 5 year old child who is asking for help and support.

Hummusandcrisps · 26/06/2025 05:20

It's been a year since DS (4) was diagnosed. He is in mainstream school, masks well in school but struggles at home. It was obvious to me he had autism from day 1 and i think part of the problem is, it's a spectrum and can be an 'unseen' disability. I haven't spoken to my MIL for 2 years because she told me "there's nothing wrong with him, it's you, you're the problem" and "you're not parenting him properly". So i let my DH facilitate that relationship. Quite frankly parenting a child with additional needs is exhausting and I'm not going to waste my energy on other people's ignorance.
I also found my SIL would say oh yeh my daughter is exactly the same or people would focus on one trait and say yeh my child does that, or he can't be on the spectrum he's so sociable. To be honest I just don't speak to them anymore because they have no idea.

Hummusandcrisps · 26/06/2025 05:27

I do think there is a stigma attached to autism and I feel it often in all sorts of places - getting the train in the UK and not being able to find an empty seat and DS having a meltdown because the train is dirty, too noisy, no empty seats and the ticket inspector rolling her eyes at us.

  • child psychologist at school (we haven't disclosed DS diagnosis because we wanted to give him a chance without being labelled as this is what we experienced in previous preschool) telling us that she will give him the benefit of doubt going into reception & calling him "this type of child" - he's had 1 incident at school in a whole year
  • he doesn't like water and won't go in the swimming pool and will not wear short or swimsuit - we try lots of things to get round this but everyone says oh he needs to learn to swim, kids love swimming and constantly push all the time to get him in the water which makes him hysterical. I don't doubt that he needs to learn but at his own pace
People just don't get it unless they have a child with ASD. It's not your job to educate them. Plenty of information out there
Hummusandcrisps · 26/06/2025 05:32

Whilst my son can attend mainstream school for now and hit his milestones we had obvious signs - echolalia, lining up toys, intense interests - tractors, road signs, insects, memorising books at age 2.5, giving long monologues to anyone who would listen at 3 about his interest, fussy eating, sensory issues - too noisy, too bright, too windy, the need for the same (plate, bowl, cutlery, lunchbox), hating any transition - at one point it was impossible to leave the house, will only wear long sleeves ans trousers, cannot take him to hairdressers- hates hair cuts, hates washing, explosive meltdowns, PDA profile, poor sleep, smearing poo, long term constipation.

The list is endless but apparently despite his diagnosis - family and friends still choose not to accept it. So we only tell people who need to know because I don't want to open a dialogue about it.

Felicityjoy · 26/06/2025 07:52

I don't want an inconsiderate adult mouthing off in front of her with "oh, don't cry Freddy, your cousin hit you because she doesn't understand your feelings / doesn't know better".

Would you really prefer them to make no allowances at all for your daughter, or to teach their children to do so?

I understand how difficult it must be to come to terms with the fact that your wonderful "perfect" baby actually has a problem, but you can’t have it both ways. Either you want others - not just your family, but anyone else it might be appropriate to tell - to know, and to make appropriate allowances for her, or you don’t, in which case they might consider her merely badly behaved.

As for your friends, what did you want/expect them to say? They are presumably not experts in autism and just don’t understand. If you want to, you can educate them so they understand better. If you don’t, you’ll just have to accept that they don’t know as much about autism as you do and might make ill-informed comments.

YABVU. The last thing your child needs is to live in isolation from her loving family and friends, people "on her side". In your understandable feelings of upset and protectiveness, that is what you are in danger of making happen.

WhichOneIsPosher · 26/06/2025 08:20

Ihaveacatwhoisfat · 25/06/2025 21:39

My MIL angrily told me my children were not autistic, why did I want to label them and they were probably just tired. I don’t talk to her anymore. She’s an ignorant twat. It was so disappointing to realise.

I had this with my MIL too. We're told by Ed psych and school SENCO that DS very likely had ADHD. When we told MIL she went crazy and said they were all wrong. Every time DS was in contact with her she would come away with things like, 'look at what he's doing, that's NORMAL', even if it was something as mundane as DS picking his nose.
Woman was a complete fanny who had form, she refused to acknowledge my DHs dyslexia when it was diagnosed in his teens

MumBlingAgain · 26/06/2025 17:49

CuriousKiteFlyer · 26/06/2025 02:15

My DD 15 has been referred for a private ASD assessment after seeing a psychologist due to school refusal. I always thought her issue was more extreme social anxiety. She doesn't display any obvious autistic traits when in the company of people she knows well. I'm concerned that she is going to be misdiagnosed. In your experience do autistic traits come and go depending on the situation the child is in or are they more consistent? Also if anyone knows, how do you distinguish between acute social anxiety and autism?
Thank you

Edited

In our experience, my daughter is able to mask many of the traits when in front of others at school - but not all of them.
She tends to feel more comfortable expressing how overwhelmed she is (typically through tantrums) in a home / familiar environment.
Good luck with getting the right support for your child!

OP posts:
MumBlingAgain · 26/06/2025 17:54

Ablondiebutagoody · 26/06/2025 00:26

People don't understand autism which isn't as outrageous as you are making out. Why pick these fights?

Yes, I myself did not understand autism 3 years ago. But if my sister / close friend / daughter / anyone really had told me they had an autistic child
a) I would not dismiss it and act convinced I knew better! That's just bad manners in any context.
b) if I cared about the person I would educate myself.

Your post is a bit odd given that I never said I expect the whole UK population to be educated on autism. You seem to have about as much empathy as some of the people I described in my OP.

OP posts:
Scrumdiddlyumptiousness · 26/06/2025 18:05

I've had

  • he's only a little bit autistic
  • there's nothing wrong with him, it's your parenting
  • he's just like my child and I know there's nothing wrong with my child
  • he always does what I tell him to (yes because he's terrified
  • he always eats what I give him
  • he'll grow out of it

I've - now - got a solid group of friends, who either have ND kids or who stuck around because they aren't knobheads. DH's family don't have a clue, and we only told mine after my sanctimonious arsehole of a father died.

Ablondiebutagoody · 26/06/2025 18:17

MumBlingAgain · 26/06/2025 17:54

Yes, I myself did not understand autism 3 years ago. But if my sister / close friend / daughter / anyone really had told me they had an autistic child
a) I would not dismiss it and act convinced I knew better! That's just bad manners in any context.
b) if I cared about the person I would educate myself.

Your post is a bit odd given that I never said I expect the whole UK population to be educated on autism. You seem to have about as much empathy as some of the people I described in my OP.

My point is that people have their own stuff going on, they don't understand autism and most likely aren't speaking out of malice. In those circumstances its not productive to generate a list of grievances against your friends and family. Where's your empathy?

lovemetomybones · 26/06/2025 20:20

It’s so demoralising when family don’t seem to have your back at all time when you need them most. My MIL and one of my SILs infuriated me with their comments constantly making me feel like it was in my head, that my son would be fine, that I’m over exaggerating.

but like I mentioned in my last post, when I calmed I realised that these comments were out of a misplaced love. They didn’t see what I saw because a.) they loved him dearly and wanted him to be okay b.) they weren’t around him day to day so didn’t see a lot of it. C) they weren’t open to listen to what the professionals were saying because it wasn’t said to them, it was relayed via me and they thought I was hyping it up.

they did see eventually and as I said I know they love him dearly and now after all I mentioned earlier they are definitely more involved, understanding and have actually offered some good advice. My SIL actually nailed it with the council when I told her, giving me the advice that won the case!

so it’s so hard when it feels like the world is against you and I fear that SEND parents need to have a suit of armour to navigate everything life throws. I personally am beyond burnt out. But I won’t stop.

finally there is a great book newly out called the senbetweeners by Lisa Lloyd, follow her on Instagram I would highly recommend her. She’s a normal woman explaining the difficulties of raising children who don’t fit the high needs category, but at the same time need a significant level of support. She’s friendly, funny and spot on. I found reading her book like talking to a friend!

like you said earlier it’s hard but don’t shut people out, it may take time but they will eventually see and when they do, your daughter and you will have that support x

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