Any parents of young children with ASD out there?

[brunetteonthebus]

I am posting for a moan really, and to see if there is anyone out there who does get it. I'm sure there must be!

I have a five year old with ASD. I hate the phrase high functioning but for the purposes of this post that's how i'll describe her because to others that's how she appears. She has no learning difficulties (the opposite, in fact) or physical health issues. She doesn't tic, flap or do any of those stereotypical autistic trait things. She speaks a little strangely, because she speaks more like a mini adult that a child (lots of copying, repeating, scripting etc) but she speaks very well with a vast vocabulary for a child of her age. She doesn't understand how to interact with other children, can't deal with their unpredictability, hates loud or unexpected noise, tiptoe walks, is extremely anxious, in short she struggles to process social interaction and communicate effectively during these times and has frequent meltdowns that last for an hour or two at a time.

She was diagnosed at three, and has an EHCP and 1-1 support at school. She's eligible for mid-rate DLA and I get carers allowance (to illustrate the difficulties that we do have). Over the last year I've got increasing fed up (hence the moan here, bear with me!) of people's ignorance, either deliberate or not, comments (about her and or my parenting) and just general not getting it.

I have a group of friends who I've known forever. All are mums, of NT children (although I have my doubts about one or two of them but would never voice this). Whenever we chat about the children they always react with surprise that I have to do things differently for DD because 'she seems so normal'. We were talking about one mums children the other day playing a noisy really boisterous game and I said 'wow, that looks like fun!' and I got several almost sarcastic comments about it must seem really noisy for me because my house is always calm and quiet. My house has to be calm and quiet or it sets DD off into meltdown. We don't play games where people run around screaming, bouncing off furniture because she just can't cope with it. I've also had to have the conversation about 'we're all on the spectrum' comments before, when some of them have insisted that's the case. It's bloody not and it's offensive and infuriating.

Then there's school. DD goes to a small school and is in a small class. All the parents know each other. DD has 1-1 support via her EHCP which I fought long and hard for. Was having a conversation with some of the mums before lockdown and they were talking about two of the other children who are showing signs of behavioural difficulties with hitting etc. One of them pipes up with 'well they have a spare TA', I explained that no they don't, it's my DDs TA which she needs because of her autism and there was just shocked disbelief. Comments like 'well all children find starting school a struggle, she's bright isn't she? She can’t have ‘proper’ autism!’ And 'did you take her to toddler groups? You're a SAHM, maybe she just doesn't know how to mix, does she really need that TA?'

I did try to take her to toddler groups. She used to go berserk. I understand why now, but I stopped taking her because she reacted like that, she doesn't react like that because I didn't take her. She's not autistic because I'm a sahm (thank god in hindsight I made that decision because I'd have had to stop working anyway).

Does anyone else find this? This is such a lonely experience. DD is making friends at school (when she's there, obviously she's home at the moment), she's getting better at navigating people all the time. But she's always going to have difficulties and limitations - and be judged, along with me for being difficult, or a pain in the arse, or precious because she's not obviously disabled in any way. But she does have a disability, that's affects us greatly.

I do speak up, I don't just smile and nod. I politely correct people when they make incorrect assumptions, I try to explain why I'm doing something that seems odd, or OTT. But I'm just tired of it.

I have tried joining groups for mums of children with ASD locally however I am struggling to connect with anyone who has a child similar to my DD. Most of the parents in these groups have children who are very different to DD and though of course it's still nice to be friends with them (and I am, and they make me feel very fortunate a lot of the time) it's quite different dealing with a child like mine and a child who is non verbal, with learning difficulties etc even though they have the same condition. There are also no parents of little girls under the age of 10 in our local group!

Sending support virtually < and wine >

I get the same re my eldest ( 16, asd and in mainstream) and more surprisingly even in the specialist units my younger 3 attend < all have asd>. There’s sadly some competitive “ my child suffers more because of X” or because theirs have different needs to mine.

I’ve also been on the receiving end of it as an autistic adult “ oh but you don’t seem it. Must be mild” or the worst I’ve heard “ ... but you’re a mum ”

I know just make short sharp responses to anyone that clearly isn’t willing to accept that people present differently

That was riddled with errors apologies - child hanging off me

Thanks @Imkindreally . Wine helps, i don't drink much but have been known to have a glass on a weekend once they're in bed. I also have a 2 year old... drinking and toddlers who like to wake at 6am each day don't really mix ha ha ha! I'm lucky in that my DD sleeps amazingly well for a child who has sensory difficulties, so I'm hoping the toddler (who as yet doesn't show signs of it like her sister did at this age) will follow suit in time! As difficult as DD can be, I know there's respite at 7pm for a good 12 hours (which is a luxury a lot of parents of -particularly small- children with ASD don't have).

Homeschooling currently a child with ASD and juggling a toddler whilst my DH works from home is interesting, shall we say!

DD is definitely fine in mainstream, with support. She'd be out of place in a specialist school I think.

I have a teenage ds who was exactly like this as a youngster, but we didn't receive any help as my area is particularly bad with autism and they only assess the children who have high physical care needs and who can't attend mainstream school.

I'm autistic myself, so never had to interact with any of the other autism parents. I find online, they are very possessive of autism in general and don't tolerate people like me or my son because we largely present as within normal limits. However, they don't see our mental health difficulties, self harm, isolation, unemployment, lack of friends, money or support. We get nothing. I fear for the future.

I find it's best not to talk to them as it's not possible for them to understand the full spectrum of autism or how it affects people. Autistic people are as varied as neurotypical people. Their argument doesn't hold up if you ask, do intellectually impaired neurotypicals represent the entire neurotypical community. Of course not. Well, their children don't represent the entire neurodiverse community either. Everyone's struggles are different and relevant.

Your daughter sounds very like mine who's now 13. I too don't like the "high functioning " term but that's what she's been referred to as she's extremely intelligent, articulate and doesn't really show any outwards signs of autism like hand flapping etc. She masks in all social situations so what my friends see us nothing like what she's like at hone.

The sly comments and digs from friends and acquaintances over the years really rub me up the wrong way. I too have had to fight fight fight for bloody everything just to ensure she gets the help and support she needs to just be in school.

No one really understands unless they too have close relations with someone who's ASD and even then no two ASD people are the same. It's a lonely place. Sending u a virtual hug x

I understand completely. I will come back with more support when I get 5 minutes peace!

OP I have a five year old little boy with level 2 autism and I totally understand. Even one of my absolutely lovely neighbours asked should I get a second opinion as "there is nothing wrong with him". He is perfectly behaved at home because that's his happy safe place and like yourself we know what upsets him so we do things a certain way but at school it's a totally different scenario. He doesn't mix with other children and refuses to join in any activities. His school are fabulous to be fair but I am dreading the years ahead when the others start to realise how different his behavior is and the bullying can start. When I was explaining to a relative recently about his diagnosis I got the whole "oh mine are the exact same as that" reply which so annoyed me as hers are super sporty, sociable children and nothing like DS.

Yes. It's the digs that get me, or the comments which really mean something else. Just come out and say what you mean hey?

Prime example. Group message the other day, how is everyone, how's homeschooling going? I replied with not good here today, DDs had two meltdowns resulting in me getting whacked, DH having to stop work to watch toddler whilst I deal with DD and calm her down, barely any schoolwork done (cause of meltdown!).

Responses varied from 'all children have meltdowns Brunette', 'yeah mine are like that too!' (are they, really?!) and 'I'm surprised you tolerate hitting, you want to get her to pack that behaviour in!'

All children don't have meltdowns. All toddlers tantrum sometimes (hello two year old!) all children throw a strop sometimes. I get that and it's tough all round. But all children do not lose complete control for around two hours at a time, unable to process anything that's said to them, making them lash out, scream and repeat over and over 'I want to stop but I can't, I don't know what my brain is thinking it's fuzzy, I can't stop Mummy!'

I do not 'tolerate' hitting. We've never smacked, I don't agree with it. Our two year old doesn't smack and actually unless she's having a meltdown our five year old doesn't either. But when she's so out of control like that and I need to move her so that she doesn't hurt herself and she whacks me what am I supposed to do? Wallop her back? Scream at her? Take her toys? Punish her for something completely outside of her control? Ffs.

I have four year old autistic twins, although at the opposite end of the spectrum to your daughter - I don’t think anyone who spends even a few seconds around them doubts they are autistic. I can see this is a double edged sword.

It’s sad but mainly I’ve stopped talking to friends with NT children about them. They will talk about their own and are perfectly lovely if I do say anything, but it’s just too hard and the gulf gets bigger as they get older.

I have the opposite issue to you - I’ve made friends whose children are autistic but the vast majority have children more like your daughter than like my twins. There’s very few people who understand that DT2 will not engage with anything at all - not toys or books or drawing or crafts or anything. People have no idea what it’s like being stuck at home for months with no respite and a child who can’t engage with anything.

Honestly if people are failing to understand or making such comments, just don’t talk to them any more or only about certain things. It just makes you feel worse and more lonely.

It is really hard. I have 7 and 5 year old DS who are both autistic. My 7 year old is in mainstream with support but still struggles with spontaneous speech and my 5 year old is in a special school. As they are both towards the 'more obvious' autism we don't have people failing to notice but inevitably comments like 'he looks too well behaved to be autistic' (eldest - no one would ever say that about the 5 year old).

My heart has really hardened over the years and I more resilient to comments but it does still hurt. I am lucky that I am able to teach part time as I value this separate part of my identity.

My sympathy, OP. I have a much older DD (14) but the ASD sounds fairly similar.

Point out to people that your DD appears to cope well because she has this extra help; without it she wouldn't. She looks as though she doesn't need help because the support which she's given is working well. (What they are saying is like saying that someone with an illness doesn't need medication because the medication they do take keeps the illness under control. It makes no sense.)

Your DD may be masking successfully but it will be exhausting for her (they don't see the aftermath of a day at school, for instance).

@SinkGirl my little boy is similar in that he refuses to engage in anything that doesn't interest him. And as I know you understand that means total and utter refusal. He can't be bribed or coaxed or cajoled to do something. If it doesn't interest him he won't do it. That includes all types of craft and also he hates going outside to play. So it's been a fun year.

[quote SparkyBlue]@SinkGirl my little boy is similar in that he refuses to engage in anything that doesn't interest him. And as I know you understand that means total and utter refusal. He can't be bribed or coaxed or cajoled to do something. If it doesn't interest him he won't do it. That includes all types of craft and also he hates going outside to play. So it's been a fun year. [/quote]
Yes, it has been brutal. They’ve been isolating for 10 days and we’ve had the first 60 seconds of Frozen II and two YouTube videos on repeat the entire time. I feel your pain.

@SinkGirl you poor thing. Other than the refusal thing DS is actually a really easy child. He loves his YouTube and Xbox and we've have had to just go with the flow otherwise we'd have gone insane. He is currently pounding around upstairs like a herd of elephants. He watches videos and runs around while doing it. The sweat do be dripping off of him .

Mine is a spinner. Can spin for hours, never falls down. DT1 is much easier to engaged thankfully but DT2 just gets no feeling of reward from anything other than fast moving graphics / pictures and food. DT1 has mainly been on his iPad while I try to engage DT2, failing miserably. Had enough of this COVID stuff now TBH but at least they have two days at school next week which I will spend in bed with a heat pad on my back 😬

Sorry OP, got off on a tangent there! I don’t mean my posts to suggest you’re fortunate, I know how hard it is when things are not as obvious and how hard you have to fight for help. We still had to go to tribunal to get the twins into the right school but otherwise it’s less of a fight when it’s so obvious and people don’t doubt it. Of course I get other kinds of comments that make me feel homicidal, but I’m learning to tune them out (and to never go to a theme park ever ever again)

I have 2 boys who have high functioning asd (although I hate that term too) aged 14 and 6. My 14 year-old was diagnosed aged 9 and my 6 year old was diagnosed last month.

I saw a meme a few years ago that said people with high functioning autism are like swans, they appear calm and serene but underneath the water they are paddling away. If I had a pound for every time someone told me my dc don't have "proper autism" I would have enough money to buy everything on the rompa website.

My 14 year-old appears mostly ok apart from the night time incontinence as long as he has access to a piano. If you look closely though he always has a confused look in his eyes.

My 6 year-old is more obviously affected although we still get people saying they think he's fine.

@brunetteonthebus I had exactly the same experience it sounds like you are having. You are living an alternative existence to the mums in your group, and I mean this very kindly - you will probably find one or if lucky two sympathetic souls amongst the school mums (or at least that’s been mine and my friend’s experiences) but most people will never truly get it. I really struggled with this the first few years but once I accepted that my son was as severely disabled (and he is very ‘high functioning’ but needs a huge amount of support in order to function!) as he is, and that their lack of understanding was never anything more than ignorance, I cared less about their thoughts and only shared pleasantries.

I seasoned at this, I have an 18 year old ds, about to do his A levels, who you can imagine I've had to fight for everything for. There are always going to be those people who don't understand, and even ridiculous people jealous at the support your child gets. I never discuss anything about him now, thankfully I can avoid other parents now he is at sixth form.
Keep trying to forge links with other Parents of children with Sen, they will be the ones you have most in common with. They will,prove a valuable source of support when you're trying to fight your LA for example, even though their children present differently to your own

Thanks everyone.

DD does mask well, school is exhausting for her and in normal times when she's at school her meltdowns always come just before bed and mostly towards the end of the week when she's just done in.

It's also true that she's able to function well because of the adjustments that are made for her and the support she has. I do things a particular way, or for example if she is invited to a birthday party I'll try to take her to the hall beforehand if it's possible if she's not been there before so that it's not a totally new environment for her. We talk about how the sound might echo, how she can put her ear defenders on if she wants, or we can go home if she doesn't like it etc etc. When we've left parties before I know people who I'm friends with have been offended and said that I need to teach her how to behave, and I know they're judging and doing eye rolls behind my back when I ask if it's possible to visit beforehand (if it's not it's fine, or I will try to organise with hall owners myself/cover any cost if there is any, etc).

It's hard because at some 'parties' she's ok. A large soft play place where she can go off on her own and play on a slide is usually ok. A small one where they're all on top of each other, not fine. I took her to one that was six children doing a little cooking class once, she loved it. Comments of 'oh see now, she can mix, she's fine!' A hall with an entertainer... not so much!

How’s she getting on in school? I know a lot of kids who are maskers who were having a shit time and really struggling at home until they moved to a more suitable school (usually mainstream independent with smaller class sizes).

@brunetteonthebus please try not to give it too much thought. In general you will not get much support or understanding from other parents of NT kids - all you will do is exhaust yourself. You are doing the best by your child. If other parents can’t u sweat and that a child with a brain disability might need other supports - fuck them! Also - these are the parents of her peers. I’d be mindful about what you share with them as it has a way if trickling through to the kids. The best advice I was given was just to keep smiling, focus on your child snd keep personal info to a minimum else you will find parents minimise, misunderstand and make you feel neurotic, even when they mean well. They don’t have the gift of understanding her that you have.

@SinkGirl Much better than we expected actually. She really struggled at preschool, massively, I'd often be called to collect her even though they were great with her and she never did a full day.

Started school, with 1-1 support available at all times (they do try to hold back when she's happy to be more independent) and actually she's come on in leaps and bounds. She's at a very small primary in a very small class which helps no end and I'm really impressed with the staff. I'm so sad that it's been interrupted because of COVID. She could actually go because she has an EHCP but 1) I'm at home so don't want to send her unnecessarily, putting us all at higher risk and also take up a place for someone that needs it more than me and 2) it wouldn't be school as she knows it anyway and the disruption would be really distressing for her.

At home though she's much worse since staring school. It has to come out somewhere and they say home is the safe space so we get the force of it when she gets in.