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.

And let’s also not forget that 10
years ago there was more shame, segregation and silence around disability. It’s now not ok to laugh or make jokes about people being disabled, and with that comes people talking about it more, so more people are going to talk about worries as it’s not shameful anymore.

It is a lot.

My son was diagnosed at 2. He presents with a very "stereotypical autism" - it's easy to see and identify. He is 5.5 now and his development is significantly delayed. He's an incredibly happy boy but I find the unknown of everything the hardest to deal with. I read so many threads on here but I think they usually make me feel worse. At 5 my son shows no sign of speaking. When we go to autism sessions he's always the one with the highest needs. He's starting a special school next year and I worry he's so delayed even for them.

It's really difficult and I share all of your worries. I don't have any answers only that I've always prioritised his mental health, he very very rarely has meltdowns, all the support workers say what a happy boy he is, and I have to hope I'm doing something small right.

I understand that the not knowing is difficult, but it is something you need to focus on coming to terms with. Life changing events can happen to people at any age, so none of ever really know what our kids future will be. If you spend your whole life worrying about what will happen when you die, you will miss out on the living part.

The most important factors in getting her a good outcome is family understanding and support and you have that. Get her assessed and apply for an ehcp as early as possible. If she needs a specific school, it is better if you can get her there from the beginning than battling to switch later. I didn't spot that my kids had additional needs until later and it is actually the one that seemed more neurotypical that now has higher support needs.

The first part is nonsense! My DD was on the pathway at 2 diagnosed at 4 (scoring 10 of the possible 12 factors, of which you only needed to score 6 for a diagnosis, but she got 10! Which they said is a very definite POSITIVE diagnosis of ASD) and now at 9, has barely any symptoms or behaviours associated with ASD. So much so that the CDC have agreed to reassess her!

That's all very well and good but when you're in a situation where you need to quantify how severely affected your child is by their Autism, not being able to say High Functioning makes it bloody hard!!!!
I had this situation when my DD tried to join a club and I had to mention to them about her being autistic due to them having day trips etc. To which I got a phone call saying that they may not be able to meet her needs (which I fully understand) but it quickly became apparent that they had no idea whether my child was severely autistic with intense needs or not. So I tried to explain that she wasn't without using the term 'High Functioning' and i couldn't adequately get across an accurate picture of my DD. I ended up having to say "...in other words, she's high functioning" as soon as I said that, they got it.

I understand the anxiety. Mine is 7yo. I'm terrified for the future. Our siblings don't have any children yet, and there is precious little immediate family available to keep an eye out for him. My hope is that he will make more leaps as he grows and become more independent.

And if not I hope DH and I are still around in our 80s and when DS is in his 50s and we can give him the best life we can. And hopefully he will be in some kind of supported living by that point.

The truth is you have no way of knowing how it's going to pan out, but that's the same with all children irrespective of disability. I'm a 'high functioning' autistic with two degrees, two kids and a mortgage. But from ages 11-17 I tore myself to shreds, and took my parents along with me for the ride. I wouldn't describe myself during that period as 'highly functioning' I would say I was barely functioning.

My child is living the scenario that you present as verging on catastrophic in your OP. He has, according to all his reports 'a complex profile resulting in a very high level of support needs' (ASD, ADHD, PDA, ARFID, severe learning disability) and we will be responsible for overseeing his care for the rest of our lives. He is 10 with the emotional and social age of around 2, and the communication of a 3yo. We still watch CBeebies. We still buy him Teletubbies for his birthday because that's what he loves the most.

I could sit and cry for the child he could have been. But who would that kid have been? My son's face with a different personality? It's be to me like the Look Who's Talking films. Weird. Like, who is this kid? That's not my son.

He can tell me how he's feeling, what he needs and where it hurts. He can tell me that he loves me, which is lovely. But even before he was able to say any of these things I had learned to read him so well that it wouldn't matter if he couldn't - because those standards that we hold our children against just don't apply to him. He's making up his own rule book and we just learn it as we go.

Meeting your child at their level and truly accepting who they are is the only way to sanely parent a SEN child. We don't live in ignorance of the issues we may come across during our lives (and after) but we don't dwell on them. Our DS is driving this rollercoaster and we will go where he takes us.

@EnglishBluebell i stand corrected. I was basing what I said on all the other families I met at playgroup for families with a disabled child, all of whom have ended up in the special schools system evenutally and have at least a moderate learning disability.
Brilliant that your daughter is doing so well.

This is miles ahead, but I'm a trustee for my adult cousin with autism, along with her brother and another cousin.

Her parents are getting older so they've set all this up for their peace of mind. We've spoken lots with them together and individually to make sure we understand what they would wish for her.

The 3 of us can act in my cousin's interest, oversee her care, make the decisions her parents would make.

She will live in supported accommodation so we don't have the responsibility to 'care' for her physically the way her parents do. And there are 3 of us so no one person feels overwhelmed.

We all love her and will make the best decisions we can for her.

It's not the same as having her parents but it's hopefully the next best thing.

There's also a provision for us to appoint new people when we're getting older.

So maybe that will calm one tiny worry in your mind op, to know there are options.

x

We all think all of those things and I lose sleep over what will happen when the rest of us are dead tbh so you aren't alone

I will say juts use that worry to focus on getting her what she needs
I started looking at schools when my son was 3 and had an Ehcp in my hand with a named MS school before he was 4 with all the support he needed . Then later got him into the best Sen school for him.

Sometimes it just happens . My family are NT as are me and my dh , both way above average intelligence but it happened to us . Sometimes it's just the way it goes !

My son is 13 now and I'm glad those years are behind me , it was horrendous worrying about how bad he would be but he is way better than I expected him to be and that's because I got her and support early..

Best of luck

Thanks again for the further replies.

Since posting this thread i have been pulled into DDs nursery for a meeting. They want to apply for further funding and put her on their SEN register.

They were very supportive and it’s great she’s getting further support. We also have a meeting with week with her consultant so we shall see what he says.

I feel a mix of emotions. I am so so happy to be heard and know I’m not exaggerating and she does clearly have SEN/autism but at the same time I feel sad (grief?) that there is now no room for doubt. I suppose so long as I had others telling me all was normal or a phase then I had a bit of subconscious hope that I was being a dramatic mother and actually DD is completely fine and she will grow up without issues outside the norm and we’ll all live your usual family life and she’ll be your average independent adult someday.
Now that hope has pretty much slipped away. It’s game time now and time to start putting things in motion.

My DP was burying his head in the sand and telling himself it was ‘terrible 2s’ when she had her meltdowns and everything was just a phase. But the penny has really dropped for him these past few weeks and today’s meeting solidified it.

He’s certainly going through a grief but it’s so good to be on the same page now and not have him try and paper of the obvious issues.

DP and DD are super close. He takes her everywhere with him, shopping, swimming, walks etc. Does her bedtime every night without fail. I can see over these last few weeks when it’s become undeniable she has autism him changing his approach with her. Rather than getting frustrated when she has a meltdown, he’s becoming very soft and scooping her up in his arms, cradling her like a baby and rocking her.
Before going into a store he’s quick to put her ear defenders on her and avoid busy aisles. I can see him looking at every situation through her lense now and constantly pre empting.

Today he’s suddenly asking me the same questions I’ve been asking on this thread about the future. Will she ever be independent? Does she have a learning disability too? How and when will we know if she’s ’high functioning’ or requiring intense specialist support for life?

I can’t answer him.

DD is so loved by us. She really is. This is such a heartache.

Hug.

And on your 'conspiracy' theories - I don't know if you've read Neurotribes by Steve Silberman? It's a great, entertaining book on the history of autism. Really recommend it , esp for parents around diagnosis time! But I work in a pretty geek sector. There's lots of intra-industry marriages. And there's lots of autistic babies. 50 years ago I probably wouldn't have made it to this industry. And likewise, big clusters, like Silicon Valley, of similar people, meeting and having super geeky kids wouldn't have been so prevalent. We're selecting for autism-ppsitive traits harder than ever before!

Once upon a time only the most severely affected would have had a diagnosis and would probably have been hidden from view in a special school.

A lot would have been considered quirky or naughty. The adults I know were able to cope and flourish because they could fill a niche in a specialist job and it was a job for life with no need to worry about interviews or appraisals or a structure at work. It feels like then there were more jobs around where someone could focus on certain often highly skilled tasks without expectations of having to interact and at least pretend to get along with colleagues. Now at work we have expected "behaviours" and a lot of interaction required.

Genetics plays a part. The kids I know who have been diagnosed, particularly when young, it's invariably then emerged that at least one parent has then been diagnosed too.

Or I've seen two parents with ASD who only met because of specialist/niche work or a special interest group via the internet and had
children when maybe once they'd have been considered "odd" or "quirky" and remained single.

Sounds awful but at least some of these children wouldn't have survived in the past. Several of the kids i know now diagnosed with it and severely affected were very very sickly babies - sometimes born very prematurely, some born with problems affecting feeding. Or even breathing in one! The sad truth there is without modern medicine and access to formula they wouldn't have survived.

@RidingMyBike

I have also observed the conclusions in your last paragraph.

I also think that many autistic children did not survive childhood, not because of severe physical disabilities, but because they succumbed to the dangers of life in less protective times. They fell down the well, or into the duck pond, they were trampled by the bull, they cut themselves and died of the subsequent infection. They wandered off and were lost in the woods….they were more vulnerable to all sorts of dangers than NT children ( who were also probably favoured for care and resources, because people had to contribute to survival at a much younger age).

However, we attempt to explain (away) the increasing prevalence : diagnosis , different social reactions, more elderly parents, more genetic matches, there is no doubt that SEN does seem to be increasing, and politically correct or no, it really is time that we started to examine what is causing this, rather than just putting the sticking plaster of accommodation over it.

The OP has my deepest respect for her ability to analyse the circumstances of her predicament.

I don't think we're even often putting a sticking plaster of accommodation over it.

There's no doubt that many of the smartest, most solution oriented people I've worked with were the autistics. So I'm not in any rush to address this as some sort of problem. The problem is in the support, or lack of it, for decent lives for everyone - not such an odd expectation in one of the richest countries in the richest period of history.

It’s not a competition. If you have a so called “high functioning” child who attempts to hang themself, for example, then you have a risk to life, regardless of toilet training or speech. I think your comment is in poor taste actually.

@Corksoles

‘So I'm not in any rush to address this as some sort of problem.’

but the OP wants to address it as a perceived problem, and that is what this discussion is predicated upon.

You both sound like wonderful wonderful parents 💓

Totally understand this. I know why functioning labels are bad, likely inaccurate and I try not to use them. However, sometimes they are a means to an end and I have used them for activities, so people will understand.

Sorry, that comment was directed to the idea that the rising numbers of diagnosed autistic people is a problem. I'm not sure it is.

I'm absolutely not diminishing OPs legitimate fears about leaving behind one day her beautiful daughter in a world that doesn't look out for disabled people.

Thank you for your further responses.

So many theories for the rise in diagnosis and I’m grateful for your thoughts.

I’ve seen the consultant since my last post. He said she meets the criteria for diagnosis and has referred her to the neurodiversity team for formal diagnosis/assessment.

He doesn’t see any evidence for a learning disability so far as she is able to retain and regurgitate information in the correct context such as counting to 20 and knowing her colours and shapes etc.
He said if she does have a LD then that would become apparent between 5-7 years old when in school. Does that sound right to you all?

thanks for your support once again x

Oh OP. You are in a state of grief and it will take a while to get your head around it. You sound lovely.

I have a high functioning autistic DD. A hell of a shock as she was developing completely normal until puberty. I dint know why we can’t use high functioning any more; it is absolutely clear to me what it means. My DD has suffered severe MH issues but yes, her autism traits means she is high functioning in that sense. I had this exact same conversation with a friend whose child is similar.

you won’t now until school how it pans out but I wanted to tell you about a couple of friends of mine. One has a son who was complety mute unto age 4. Very much autistic. He is now 12 and in mainstream ed, high functioning, clever and doing well with friends. I think you can see he struggles socially but he is doing well. My other close friend has a DD who was diagnosed very early. She had many traits at an early stage. She is also 12 and doing very well. She does struggle academically but not hugely and is happy and sociable. Both kids were clearly autistic from a very young age and have lovely parents and are thriving

I don’t know what is going on but I believe these kids are the canaries in the coalmine of our toxic world. Their systems perhaps cope less well. Look into the importance of a well fed brain - good fats, B vitamins and proteins.

I think being academically capable is part of the picture, but there is so much more involved. My dd was a bit slow to start reading, but at 7 has more than caught up, and in many regards is exceeding expectations for attainment. She struggles with games, major anxiety around getting things wrong, changes to routine and sometimes this gets In The way of her being able to fully participate and means her tested aptitude is far below what she is capable of. It is hopeful from the perspective of what she is capable of, but so much uncertainty around whether she will be able to demonstrate that capability when it matters.

It will become apparent with time if there is LD, unfortunately there's no way of telling. What will happen if there's LD is that the gap between her and her peers at school will gradually get wider and wider. By then you'll probably be much more used to parenting a child with SEN so you hopefully won't be too freaked out by it.

My DS has LD, but in many ways he's an absolute genius. The very essence of being ND is having a spiky profile.

You work in adult safeguarding so you see the very worst in human behaviour. I also have a role which heavily involves both safeguarding and autism. There are some inspiring colleges and residential settings or social care out there, you just need to research because the LA won’t naturally recommend due to costs.