My toddler is probably SEN/Autistic and I need to get these thoughts out.

[Buttercupsandpoppys]

This is probably the wrong place to post this but my head is whirling and I just need a safe space to get these thoughts out.

I don’t want to offend/upset but I am just going to speak unfiltered/uncensored because I cant speak this freely in real life and I really need to get these thoughts out of my mind.

My gorgeous girl is 2 years old and it’s becoming more and more obvious that she’s autistic. My friend actually suggested she was when she was around 10 months old and flapping/rocking a lot but everyone reassured me that it’s normal infant behaviour they tend to grow out of.

My dd was delayed in many areas of gross motor skills, didn’t crawl until around 14 months or walk until 2 but she was okay in other areas. Shes been referred to peads and is under a consultant for the delays but I was hopeful that things would ‘get better’ and she would catch up. But as time has gone on it’s become undeniable she has autism.

She has meltdowns in public when overstimulated, stims and has little interest in other children. Watching her at playgroups and she’s on the outside on everything.

She is so loved by me, her dad and our families. I want the very best for her which is why it breaks my heart.

I have so many questions that no one can answer and only time will tell.

I know it’s not politically correct terminology but will she be high functioning or low functioning with a learning disability? How can I tell?! By when will I know?!

I work in adult services and a professional and I know what awaits her if she has learning disabilities and autism after me and her dad have gone and it’s awful. There is no protection and it doesn’t matter if she had millions in the bank for private care if there is no loving parent to manage/oversee it.

If she’s high functioning then I know she can lead an independent life and I can dedicate my life to ensuring she has the skills and coping strategies so she can go out into the world on her own feet.

I have some friends who have autism. They are professional, capable adults with partners and careers and mortgages etc. They have struggled of course but they can live independently and have a ‘normal’ life. Will this be my daughter?

Then I have my service users and my lovely younger brother whom my parents adopted who have autism and learning disabilities. They are at the whim of others. The ones without families or parents have passed are then at the mercy of the state and whatever government is in at the time. Will this be my daughter?

The not knowing is so painful. I can’t get to the stage of acceptance and planning when I have no idea what I’ll be working with or what to hope for.

Will she be in a special school thriving or in a mainstream school achieving qualifications whilst struggling socially?

Then I look around me and go to play groups and have met so many other mums with children with SEN and ND. Like literally every group at least 1 other mother has a child with ND/SEN either at the group or older and in school. So then I ask myself WTF is going on?! Why are there now so many of us?! Yes awareness is now there but c’mon! This common?! Really? At this rate then how can it be neurodivergent when a lot of the population are divergent? Then surely there’s no longer ‘nureotypical’ anymore as being divergent isn’t rare? Like wtf is going on? Why is this happening to our children? Why so many?
But that also makes me very hopeful as then the world will become more adapted for my DD and others like her and their life changes will be much improved.

There is no one on either mine or DPs side with SEN/ND. So how did it happen?
Was it the medication I was on in pregnancy? Why us? But then the spiritual/ philosophical side of me thinks maybe we were chosen to be her parents because of who we are. My parents adopted my younger brother with autism and LD when I was a teenager. So I learned so much about it and ended up in a specialist role for adults with needs. My whole profession and university education is based around that. Me and DP are a very stable and reliable couple with great team work. In a way perfect for a child with needs. Maybe this was suppose to happen as the universe knew we were somewhat equipped to deal with it?

I have no idea. We may never get answers.

It’s the ‘not knowing’ that kills me. Sometimes I think my DD will be fine and thrive. Then other times I hold her as she has a meltdown in public and I lose all hope.

I’m sorry for this rambling post probably full of typos and making little sense. I’m just thinking out loud as few so ungrounded at the moment about it all.

I guess I'm trying to get across that even if the OP's child is "high functioning", it doesn't necessarily follow that they'll be fully independent.

From the op:
"If she’s high functioning then I know she can lead an independent life and I can dedicate my life to ensuring she has the skills and coping strategies so she can go out into the world on her own feet."

As I said, my "high functioning" child is this close to being "at the mercy of the state".

Just being candid. And trying to be realistic. Sorry if it's not what you or OP want to hear.

I'm probably being particularly prickly as I've worked so hard for almost a year with multiple referrals to several services to avoid the situation my daughter is now in, but no one helped and things have escalated so much for my "high functioning" autistic child that a meeting next week will decide her fate.

Bowing out now.

@Lemevoir so sorry you are going through all of this it must be incredibly difficult and frustrating given the lack of help.

Thank you all so much for your responses.

a lot for me to digest.

I keep obsessively watching DD and watching YouTube videos of parents with children who have autism and those with autism. It’s become a borderline obsession.

I know everyone’s right that it’s pointless me asking what’s caused this but I can’t help it. I can’t help feeling like a conspiracy theorist nutjob which isn’t helping. On my mums street 3 children have autism.. 3!! My next door neighbours teenage son has autism and ADHD and then those other toddlers at playgroup I mentioned earlier. Everyone I speak to about my DD tells me their niece/nephew/grandchild/child etc has ASD.

In a way it’s good because that means there is so much awareness around it so I don’t feel so alone. But then I’m also like WTAF is going on? Increased awareness and earlier diagnosis can’t account for the fact there is SO many more now. I sat in the garden with DD earlier watching her stimming and staring at her hands I thought Wtaf is going on with our children? Is there something in the water? Is it UPFs? Pollution? Like a nut job i was thinking of all kinds of crazy conspiracy theories.

My mum was telling me in her town where everyone knew everyone there were about 3 other children she could think of that had noticeable SEN in the entire town. Certainly not enough to require several local SEN schools and mental health services. Even if they were ‘hidden’ the numbers couldn’t add up to how prevalent it is now. She had 5 kids and and ran toddler groups/fostered and can count on both hands the amount of notable ASD/ND toddlers she saw over two decades. Now when you go to groups there is always one or two.

I know everyone says it always was as prevalent as it is today but hidden away but I feel gaslit by it when I see DD sat there stimming and blinking and that it’s pretty much ‘the norm’ now that pretty much most families of 2+ children have at least one child like this on some level.

Sorry I am going on a tangent. I know it won’t change anything me ruminating over it though. Even if there was some sort of tangible cause to the rise in ASD it won’t change things. I don’t even want DD to change (other than the distressing meltdowns). She’s gorgeous and funny and simply delicious! I just want her to be happy, safe, healthy and have her full potential reached.

You are all wonderful who have posted. You have all been through this and are still going. It’s a life’s work, really it is. Xx

@Lemevoir so sorry your child is struggling. I agree that the term ‘high functioning’ is problematic as it kind of whitewashes the challenges and minimises the impact. Sometimes the impact IS minor, but sometimes (as it sounds like you are now) it is catastrophic. My dd is younger, but I see how wildly and quickly we can swing from managing fine to crisis.

I think we just don’t have a common language for the wide wide presentation of autism There is a need to distinguish between those with the ability to sometimes function vs. those that are nonverbal or for whatever reason never really manage mainstream. That said, ‘high functioning’ is really dismissive of the sometimes profound challenges these people face, and I understand the visceral opposition to it as a categorisation mechanism.

I don’t have a child with autism (that I know of - DS is 1 but seems NT at the moment) but I absolutely agree with you, and find it scary that nobody seems to want to notice what’s going on and shuts the conversation down by calling anyone with concerns a bigot/goady. I wonder just how many children will have autism by the time we wake up and investigate the rise - there are 3 in DD’s primary class, so 1 in 8ish. If 1 in 8 children suddenly had type 1 diabetes we would all want to know what on earth was going on, but because it’s autism we are pretty gagged in discussing it. It’s a huge concern and tbh I think we need to start notifying women of the likelihood of a child with special needs before they get pregnant because the odds seem so high now they should be informed it’s not a remote prospect any more.

Hello,

I’m so sorry to read thisx I’ve felt this myself and have been in the headspace. It’s a sad, lonely time.

My daughter presented similarly to yours - was globally delayed which has turned into a learning disability but may actually be autism or some genetic condition - we don’t really know. I do know that she is significantly disabled and has
a moderate learning disability.

If I stop to think about it, all those things you mention about her future terrify me, but because it’s so out of my control, for now, whilst I have three children under 8 to think about, I shut it in a box and put it in the back of my mind, and focus on day to day living, which is pretty normal family life. 50 years ago children like mine were hidden away and now they are celebrated (by me at least) so who knows what life will be like when she’s an adult.

The Uncertainty of the bit you are in as complete hell and I would live a thousand days knowing that my child is disabled and worrying about her future, than thinking my child is disabled, worrying about her future and being shut down by ignorant people’s attempts to ‘reassure me’ by telling me
’shes normal, there’s nothing wrong with her’ which actually just left me feeling isolated and alone - and furious about the language

I was told that when she was 5 we would have a good idea about what we were dealing with, however, my gut feeling has been pretty accurate
all along.

what no doctor could have told us was how sweet she would be, how her little words and actions would make the teachers at school adore her. They wouldn’t have known how much she loves clothes and dogs and shopping and Taylor Swift and how she makes other children with autism and learning disabilities feel like life is fun and they have friends.

Its so fruitless looking inwards here -
I spend years doing this too. Some children are born with learning disabilities which makes some women mothers to children with learning disabilities, it’s a natural occurrence. Try to focus on finding out what she enjoys, what she loves and fill her life with it so that she has the best time in life - because if she’s anything like mine, she will let you know when she’s not happy!

Autism isn’t inherently a bad thing - many have brains that are very good at very useful things. DD has an amazing memory, has a deeply ingrained sense of justice and fairness, communicates candidly and will work relentlessly to accomplish a chosen task.

higher rates of diagnosis is largely down to better recognition- half my family would probably be diagnosed today, but in a previous generation were just ‘weird’ or ‘quirky’. It might also just be brains evolving to a new environmental - there is a reason tech companies have disproportionate numbers of nd.

i have reread every response and I am so touched you have all taken the time to reply with your stories.

I’m also sorry you’re also in this difficult position of having the worries and anxieties of the future. But it’s also a small selfless act to have shared your worries/stories with me to show me I’m being heard and understood. You’ve no idea how much it means. Especially when I’m posting completely uncensored and letting my thoughts free flow without fear of judgement. It’s difficult to speak about and be so openly vulnerable when your always having to put on a strong face as your child depends on you. Xx

@MaryMaryVeryContrary THANK YOU!!

Thank you so much for that response. I feel like I’m either being gaslit or going crazy when I talk about the rise in SEN.

YES people had autism/SEN/ND throughout history and YES a lot were hidden away and YES awareness has now become mainstream but there is no frigging way it was to this extent where every class, every street and every person had/knew several people with autism.

A few weeks ago I was at a generic playgroup in a local church hall. I was sat with several other mums and we were chatting about our kids/development/SEN. Two mums had already received an autistic diagnoses for their 3 year olds. Another mum had an older child of around 7 diagnosed and another mum was saying her step daughter of 11 had SEN.
I then looked at my DD who was sat on her own playing with ear defenders on and then looked across the room and saw the other mums kids either also wearing ear defenders or stimming and then saw another child rocking back and fourth and flapping. I then thought to myself WHAT THE FUCK?!!! It honestly felt like a moment in an episode of black mirror or something and I was in an alternate universe.
Something is going on?! Am I going insane? Is nobody else honestly seeing this?!

Can people honestly say that this is completely natural and the way children/people have always been?

I think that’s why I struggle to just accept it as ‘one of those things’. Because if there is a cause of this sudden surge then there must be something can help/assist and prevent further increase.

If this is genuinely the case and how it will be from now on in regards to numbers of SEN then you’re completely right. Prospective parents need to be informed of how likely it will now be to have a child with SEN. It’s no longer a completely random thing that has a slim probability of happening to you. If you have 2+ children then you have a high chance that one of them will have SEN so need to be prepared and resourced for that and view it as a good possibility of your parenthood journey.

Sorry another unfiltered tangent there. But it feels so good to be listened too and have someone else see what I’m seeing and not to feel crazy.

I haven’t read the thread but don’t punish them anymore for being autistic when they have it hard enough in life and things are really difficult for them incredibly difficult

When thinking about what your DD will be like as an adult, don't forget that even when people develop more slowly than the average, they do often keep steadily developing. She may 'fall behind' her NT peers and/or never quite end up where they do, but just because they can do something aged 6 that she cannot doesn't mean that she won't be able to do it ever.

"It’s actually horrendous and it makes me feel sick when I think about it. Even if I were a millionaire I couldn’t change that for her if she were to be severe. I’ve seen very wealthy parents leave their child 1.5million. All it meant was the service user was self funded and not funded by the state. But they couldn’t manage their own finances so the local authority got deputyship for finances and managed it for them. But still the same carers as anyone else. They were no better protected."

It may be possible to avoid the LA taking full control by setting up an independent trust for finances run by a firm of solicitors plus whoever you think might be relevant (younger family members etc). They could be instructed quite specifically about the type/volume/nature of carer to employ, and left with guidance about housing decisions etc.

OP, it sounds like you are very stressed by the situation. One thing I would say: Your job by its nature brings you into contact with situations where things have gone wrong or are going wrong for the vulnerable adult. There will surely be many more cases where things go OK and people manage without so much outside help, but by definition you will be seeing less of these people.

All my DC are Autistic, but all very differently effected. Middle DS we started seeing signs at 20 months, behavioural issues, hurting himself while hyper, hurting others. At 3.5 when first assessed he had significant delays mostly around 18 months, across the board in gross and fine motor, social skills, speech both receptive and expressive, communication, behaviour, meltdowns hurting himself and all of us including his siblings. He did interact with siblings but.no other kids. At 5 he couldn't count to 10, say the ABC, write his name. Its taken a lot from me over the last 5 years teaching him basic things other kida pick up automatically and a lot of therapy, for a long time weekly speech, and fortnightly with a physio & an.Occupation therapist. He is still behind with writing and spelling (may have disgraphia), hes behind in english because of this, but is at level or bit above for his othet subjects and.well ahead in maths. Has a big bunch of friends, I know this factor might get more problematic with age. I think he will always need some degree of support, but none of it anything like what his needs appeared to be as a toddler and a preschooler and into early primary. I think he will be at home a longer than normal, but I think he will be ok now and even one day move out.

There is a Autism on both sides for my DC, in XH family and my family. Even without that history of it there can still be a genetic component in play. I know how horrible the not knowing and the worries are, Id always prefer to know so I can digest it, work out what's needed and make a plan. Unfortunately the only thing that's going to tell you is time. We're a world away from where my fears thought we would be. At 4, 5, 6, 7 I had the same fears you do, I still worry for him, but Im not soscared for after I'm gone anymore. You don't know what you don't know, try to focus on meeting her where she's at right now and being in the present. If you find yourself focused on the future worries try to distract yourself, try to throw yourself into or focus on something else. I know a lot of Mum's with SEN kids honestly most of us try not to think about it too deeply. There's too many unknows for all of us in this situation.

I feel like I could have written your post … it’s my DD who is 22 months so not yet diagnosed.

You work with adults in a teacher so see how much kids who are ND really struggle even with a diagnosis in the classroom- from emotionally coping to loosing friends as the friends mature and they don’t. I have had some many sleepless nights in a panic about how she will cope at school and in the future. I also freak out as I had her in my late 30s so I’m not going to be here forever… who will protect her when I can’t!!

I’ve also realised- and I hope this is a safe space to write this - I’ve had to mourn the vision of what having a child will be like. When don’t get to do a lot of the things other parents of toddlers are doing due to her not coping in loud areas - I can’t imagine yet going to musicals , shows, concerts and travelling the world with her as it will be too much and that idea upset me and still does even though I love her but the image in my mind is still adjusting to our new reality

Keep posting her and hopefully we can all support each other

I often worry about my dd in this respect too, I do not know if she is ND but have had times when I and others have asked the question. It’s scary. I suspect DP and I are both ND too.

You are right, I go to several toddler groups with only 3-4 children attending and in all of them there is at least one child who is clearly ND. It’s incredibly strange and I don’t know what’s going on.

@Lemevoir I agree with you, and I think @MaryMaryVeryContrary has a very apt user name.

Both my kids are autistic. Turns out my husband is too (collectively we had no idea until my eldest's needs became apparent).
The same crippling anxiety about the future absolutely floored me when we started this journey. I'm able to tolerate the uncertainty of it a little more, purely because I just couldn't sustain that level of anxiety and parent in the here and now. I think when the school/EHCP process and things start happening on the diagnostic pathway it gives you a bit of grounding in the present stuff that needs your attention. That really helped me because I felt there was stuff I could 'do' rather than be consumed by the worry.
I've done everything I can to ensure I'm safeguarding their future a bit - basically I've lost weight and live a much healthier life for the sake of trying to be around as long as possible. I've attended courses on wills, trusts, and adult social care which have also helped me feel as prepared as possible for the future.
It'll be ok, OP x

Before OP's seconds post I was just going to say to start with it is better now that you are more likely to seek a diagnosis and then you know more what you are dealing with.
My DD is in her 30s and been diagnosed as an adult after suffering horrendous MH problems since childhood.
GS5 is going through the process and we just take 1 day at a time with him. High functioning and highly intelligent there has been a lot of masking going on so burnout was something we didn't want to go through as looking back at DD we can see where this happened.
Take every day as it comes. Awareness is better equipped.
Keeping notes can help you stop feeling overwhelmed especially if you also lost the positives too in a day they are easily forgotten.💐

Just another voice to add to the collection that you're are not alone OP. You have written so eloquently all the thoughts I have had regarding my own son who is 4 and starting school this September. We are on the waiting list for Speech and Language (for a year so far) and for paediatrics.

It is a constant worry just sat there at the back of my head of how is future will be and is there something I did or why there seems to be such a rise. I find it so hard to watch him with others his age or when I watch videos of my daughter at the same age, not disappointed, but sheer worry that he won't be able to experience the same as the others and how tough the road may be ahead for him. The unknown fills me with dread daily. Rationally I know there is no use worrying about things out of my control, but then I worry about what if it is? Could I be doing something more to support him? I read the SEN board in the hope of finding posts displaying similar behaviours to my son, watch social media bloggers with their ND children and how they get on with day to day life. I know at this point this is a 'me' problem but I just can't seem to help myself.
My husband and I do not know any other children of our friends and family that are in a similar position, if anything his parents seem in total denial and that he will "catch up when he is ready".
I'm afraid that I have nothing of value to offer to ease your concerns, but just company in them.

@PivotPivotmakingmargaritas

I completely relate to mourning the loss of what you had envisioned.

Speaking again with a filter, I had a very different image of the future. I envisioned her as an adult and us having weekends away, trips out, afternoon drinks and a general adult/adult relationship when she had grown up like i now have with my own mother. I didn’t envision a lifetime of adult/child type relationship where I am overseeing support workers and ensuring she is kept same from the world. I thought any type of care id be doing would be laundry in the holidays when she’s back from university/travels or cuddles after breakups etc.

It’s the not knowing that is the killer. Because I know others diagnosed as adults with autism who live with husbands/wives and have kids and full time jobs etc I wonder how they presented as toddlers/children?
Were they like my DD at 2 years old but were able to overcome so much over the years and also mask to the point they are entirely independent, so my DD could be that way too? Or did they present as your average toddler and there were no signs until later years and my DD doesn’t have a hope in hell of becoming that way?

It’s so difficult isn’t it x

I can tell you from experience that those who appear 'high functioning' can often be more at risk than those who appear 'low functioning'. Those labels are really more about what you observe, not what is going on in the person's mind. If they are good at masking their struggles, they may appear to be doing well while dying inside. Depression and anxiety are very common in autistic people.

I'm willing to bet there are people in your family who are autistic/SEN. If you are autistic yourself (and yes, you can be, even if you have never noticed it obviously), then autistic ways of being are quite normal, so might not stand out to you. I've been told the mother is usually the last to be diagnosed and that there is often an autistic mother where there is an autistic daughter.

I do know plenty of autistic people who are very successful in life, completely independent. I also know those who are or have been suicidal (usually the ones who looked like they were doing well on the outside).

My DD wasn't diagnosed till she was 14, yet it is unlikely she will ever be fully independent. I have made plans for her with other family members if I'm not here. I do worry about her future all the time when I'm not here.

You can't know what the future will bring. You might not have to be concerned, or she might have high dependency needs. The best thing is to just wait and see and do the best you can for her meantime. I know that's not comforting but it's all any of us can do.

YOU ARE NOT GOING CRAZY! Not in any way, shape or form. I just got back from dropping DD at school and one of her friends (who has ASD) was having a meltdown before going in (he’s a great kid and it manifests as speech delay and v anxious in him). Another little girl was also being dropped who has ASD, but has no speech or comprehension at all. And several children in the playground with ear defenders on, most of whom I assume are autistic. This is 1 snapshot, of 1 small school, in a very average lower middle class area.

Like you I absolutely accept autism has always affected people, will always affect people, but I don’t believe that ‘better diagnosis’ accounts for the rise. These are not children who could’ve slipped through the net before, and while most would’ve gone to special school, we actually have more special school places now than ever and yet they’re still seriously in demand. I didn’t even know children could be ‘non verbal’ until about 5 years ago. If you do a search for non verbal on this website, 95% of the threads are from the last 5 years alone.

I don’t know what the answer is because until there is a full and thorough investigation and comparison with past figures, the scale of it will stay hidden and therefore adequate support doesn’t need to be provided as it looks like a minor issue. It may be a bit like thalidomide, with the true numbers emerging in later years along with incredulity that nobody picked up on it before. What makes me sad is that by then the numbers will be so enormous society will be unable to provide them with anything but the bare minimum, if that. There will be a lot of v elderly people struggling to care for their grown adult children.

But, like I said, nobody wants to hear it and will try to shut down the conversation which is counterproductive because now is the time we really need to begin planning future care for all these children, building educational or day respite centres, etc

Just wanted to add that, even if your child is going to go on to be fully dependent (and there are plenty of other ways of being between this and fully independent), I have been able to come to terms with living in the present where everything is okay and just doing what I can. Not that the what ifs don't rear their head sometimes, but most of the time, it's been possible to find peace with it all.

You’re processing a lot and there is a lot of grief mixed in there, you’re at the early stages of this. Along this route you will meet more parents in the same place, carve out a life for yourselves and find a way to make it ok.

I worked in a primary school 10 years ago and I had a whole table of children who at the time were just a bit odd, dyslexic or ‘we don’t know what’s going on there.’ Now every single one would be on the SEN register. Then there are the ones that are reaching expectations but not coping socially, they would have also been considered quirky. It’s really recently the labels have started. All this testing and benchmarking from year r flags the ones that aren’t meeting the expectations and those are now investigated and labelled.