Worried sick after autism suggestion

[MrsM24]

Hi I would really love some advice, my son is 6 years old, in primary 2 and the assistant head teacher approached me at the school last week to say my sons teacher has noticed some repetitive behaviors with him and also said that he's not reciprocal when talking to his peers.

She wanted to ask if we have noticed these behaviors at home and had any concerns, we have noticed he has these little tics (as we thought of them) that show up for a few weeks then go, then it's something else. For instance excessive eye blinking, then wobbling his head, now he rubs his temples quickly and fidgets with his socks and pants a lot.

With the non reciprocal conversation he does talk a lot, and can have a 2 way conversation asking questions back and forth but a lot of the time it's talking facts and figures at you (a lot about the titanic at the moment).

Teacher thought it would be good to have a meeting about possible causes and I'm waiting on a date from her with that. Looking at symptoms online it does seem like it could be ASD and I won't lie I'm heartbroken, I feel so sad and I can't stop thinking about it. He's so clever with reading, numeracy, beautiful handwriting, good eye contact, not bothered about routine or change, easily frustrated at times but he's never had a meltdown. He's shy and watches from the sidelines a bit at birthday parties etc but will join in eventually. We have thought about ASD before, he had a speech delay but health visitor said he was developing fine and once the words came we put it out of our heads. When the eye blinking started we again worried but with no other symptoms it seemed more like a tic which google said could be common in childhood. Feel stupid now for not being more aware of the symptoms and spotting it sooner.

I'm sorry this is so long I just can't stop worrying now about him, his life, school life etc. is there anyone who's been there and can help me through this? I'm so lost I feel like Im struggling to cope with this.

Thank you for anyone who got this far x

Ok. Supposing he is autistic. He's still your funny, clever, kind boy. This really really really isn't a tragedy.

Try looking at Chris Bonello, Damian Milton, Pete Wharmby on twitter to get an idea of how autistic adults think.

Thank you for taking the time to reply. Yea he's still all of those things and I'm reminding myself of that but I'm also a bit overwhelmed, I'm scared of the unknown for the future I guess. It's a daunting thought that this is the start of his journey of investigation, diagnosis, therapy or whatever it brings. I guess I was just hoping for some advice or experience in the mean time x

It’s natural to be concerned, but honestly there’s no point worrying yourself sick about things that may never happen - it sounds like he’s doing well overall. The best thing to do is push ahead with a diagnosis, which may take a while, and to funnel your concern into reading about autism and strategies to help and support your son. Even if he turns out not to be autistic those strategies will help him.

Thank you very much for your response, that's helpful. I'm going to go to the library this morning to see if they have any books on autism, if not I'll order some online and see how I could be helping him. Thank you x

OP, your son sounds delightful. And if he is autistic he'll still be delightful because that's already the person he's grown to be. If he is diagnosed as autistic then one positive you'll get from this is that, as years go by and you may (or may not?) be mystified by things that he finds challenging, you'll at least have a wealth of literature that provides some more relevant ideas for ways to support him. It will just give you a bit more detail in your road map. But he sounds like he's already growing into a wonderful boy, bright and capable, and a diagnosis won't take any of that away, it will just arm you (and eventually him!) with more information.

Thank you so much for such a lovely post, you have given me a lot of reassurance with your kind words. He is everything to me and I'll do whatever I can now to support him x

Please do not feel heartbroken.

Your little boy is wonderful just the way he is.

I have an ASD child, I got diagnosed after him.

I went through a lot of difficulties with school, work and with relationships specifically because I had no diagnosis, no school support, no DLA. Nada.

I have multiple qualifications, friends, married, kids. Hit a few milestones later but that is life.

I see my child be supported, respected and valued. Yes he will need adaptations and yes it is harder that mothering a neurotypical person. But he is phenomenally fun and brilliant and better for his ASD. I do wish that I had had the opportunity to be diagnosed and understood from a young age. It would have been life changing.

This is an opportunity for your son to have a more enriching, fulfilling and safe life. If he is autistic, it is the best way for him to meet his potential.

Perfectly natural to be concerned, but everything (after quite a lot of paperwork) will work out.

Thank you for your lovely reply, I'm so glad your son is being supported and respected and thank you for sharing a bit about yourself as well. I am starting to get my head around it a bit more now it all just came out of the blue and threw me for a bit.

He went to Beaver's for the first time last night and took to it really well. He met a boy from his class on the way in and they were off playing straight away. He joined in all the games and is keen to go back next week.

His repetitive stim/ tic? seems to be becoming more frequent over the past few days but he's also been getting up really early as well so not sure if tiredness maybe plays a part. Also he's mentioned a feeling in his tummy and not feeling like eating much the past few days so I'm wondering if there's maybe a bit of anxiety involved.

I'm autistic and I won't lie, even with a diagnosis school was hard. But I grew up, found my niche and now have a good job, DH, Dc, a few friends and am generally happy. I've also noticed that the support DD is getting in school is already way more than I ever did.

I remember feeling like you did.
It's not that we're heartbroken for us but for them.
It's scary tbh right at the beginning.

The main thing I've learnt is, having a diagnosis, is just that. Having the diagnosis.
It doesn't change anything about him he'll still be your lovely boy and you can get the help he needs in place to help him flourish.

I also found doing a lot of research, watching docs helped me understand how big the spectrum is and the different needs etc.

Sending love

Thank you both for your replies, it can be such a supporting community on here and it has really helped me so much to have all of your input. Its great to hear a bit about you all and that your children are getting the right support.

Yea I was definitely heartbroken for him, my stomach sank every time I looked at him and thought of what challenges may be ahead for him and the conversation we may need to have but I'm really trying to focus on research and find out what I can do to help.

I was considering taking him to the gp tomorrow for his tics, they've been going on quite a while now and it changes, he's had 4 or 5 different ones, each only lasting a few weeks then it changes. I feel they may be stimming and part of the bigger picture but I also just want to have it checked even if just to rule out a physical reason for them.

Has anyone got any experience of stimming, is it common for them to change or would it be more consistant?

Thank you all again x

Just to reply to this first off, if he’s started a new activity, particularly with high social demands, you can expect to see an increase in sleep disruption, changes in appetite, repetitive behaviours and basically regulating himself to cope.

Anything out of the normal routine will cause this such as going on holiday (or someone who cares for them going away/working more etc), sports day/non-uniform/school hols, annual holidays and birthdays, outings to unknown places etc etc.

You can expect to see all of the issues settle down once beavers becomes the norm. Visual schedules and preparing in advance can really help. We essentially programme Dc night before saying tomorrow you are going to xyz, for bday parties and anything that’s a one off few wks before, holidays abroad months before.

As for the stimming, mine have tended to be pretty consistent involving hands from an early age. More complex and varied in teens/20s.

Within the confines of his own home try and let him stim providing he isn’t hurting himself, as it helps him to manage stress and cope. It is part of who he is.

Really can’t emphasise enough that the challenges without recognition and diagnosis are substantially greater. Genuinely, never mind educational attainment, ASD people particularly in childhood, can be vulnerable due to wandering, lack of awareness of danger, lack of theory of mind, literal interpretation and always trusting, issues with motor skills/coordination/visual perception and reaction times to outline the main issues. With understanding all of this, you and the adults around your son can ensure he is safe and thrives with the understanding that his developmental capacity in certain areas may lag that of his peers.

However, it’s important to note that many autistics have great talents; they may be able to hyper focus, have great attention to detail, visual memory and greater recall etc, creative, great with science etc.

It is not the doom bell ringing, nor something to be fixed, your son if diagnosed, just thinks and processes differently to the majority of people, that’s all. I would err on the side of you know it’s just amazing everyone thinks in different ways, isn’t it great - rather than misery and it’s far too soon to be dwelling on those discussions. There are plenty of workshops and books to guide you with that in time.

They often say you have to go through a grieving process for the child you thought you’d have… I personally found that offensive. I wasn’t sad for my son, but relieved that he wouldn’t have to go through the myriad of shit I had to. I felt grief following my own diagnosis for what I l went through. In any event, I’ve yet to meet a parent whose child turned out to be exactly as they thought they would be. Every family has issues of one sort or another with children along the way.

Please take care of yourself, your lovely son and the rest of your family. I wish you all the very best with everything going forward. Everything will be ok, keep reaching out for support, for you as well as him x

Hope you are feeling a bit better OP - you are clearly a caring and capable mum and your kid sounds fab. One thing - waiting lists for autism assessment are years long and in some areas they aren't even taking on kids who aren't in crisis. If you haven't got the cash/don't want to go private it might help not to think in terms of 'is he autistic/is he not' but in terms of what his needs are and how those can be met. Explosive child/ Out of Sync Child and Out of Sync Child has fun are often useful books.

I'd steer the hell away from anything that talks about ABA and 'behaviours'.

Agree - stay away from ABA.

Agree waiting lists nhs are 2-3yrs for diagnosis which is too long.

We paid £850 private (wait time 6 - 12wks), but I believe it is now £1000 - 1500 depending on where you go. Make sure they follow NICE guidelines and that the report can be ratified by the nhs trust you are referred into. First refer to nhs, then seek private; they send report to nhs provider for ratification, then you are in to nhs for intervention.

Regarding paying for it, what we did was put it on credit card, then on the day of diagnosis we rang and requested a DLA form, this was filled in and was successful, debt was paid off within a few months.

Note you do not have to wait for a diagnosis to apply for DLA, it is needs based. We waited as enough going on and wanted it to be clear cut with enough medical evidence.

Him being autistic isn’t going to change anything - he will have always been autistic. He seems like he’s doing really well - I’d feel blessed personally.

My little one is in the process of being diagnosed with Autism, and even tho deep down I knew he was different to my other children I was still upset shocked and walked around in a daze for a few days, sadly no many talk about is we as parent feel a grief for the life we assumed/dreamed for our children and many parents I've spoken to have felt this but no wanted to say it out loud, it does get easier and you will come to terms with it.

@goldenT I like you was in a daze and distraught after finally medical professionals brought up the ‘A’ word.

Not so much about some preordained life my child was going to have that had been lost - because no child ever lives the life their parents think/want.

I felt overwhelmed that things were going to be much harder and that it would all be a fight to make Dc life manageable for him. And I felt distraught he would be ill equipped to deal with many aspects of the world.

Mostly he has taken things in his stride and is happy.

It’s so sad that there is still all this negativity surrounding autism. I personally don’t think that they should be pushing the grief mantra like the child has died… they are still the same child that grew in the womb and that has been toddling about for a few years by the point of any signs… it’s heartbreaking parents are sitting dissociating from the wonderful little person they have, wishing for someone who never existed.

As I say I was really upset, but about the prospect of my child facing difficulties and about how damn hard getting support is. When you’re dealing with a child with ASD you run on empty, to have mountains of paperwork on top, it’s a lot.

I think the kindest thing is for anyone to handle a prospective or confirmed diagnosis as they see fit. Feel however you need to feel and don’t feel guilty about it!

It will get better, you will come to terms and it will all just become a normal part of life.

I agree with @SensationalSusie about the whole "grieving" thing. Maybe some parents do, but it assumes we enter parenthood with delusions of instagram perfection, which personally I find a bit insulting to my intelligence. For me, the things I feared when we first started down this path were first, how hard DS's life could potentially be for him, and second, how hard my life was going to be, not least because it would be swallowed up by the SEND system. Some of that is proving to be true (I am effing exhausted by the SEND system, or lack of it), but not all of it.

Also agree that the more you learn about autism, the less scary it becomes. Some of us of a certain age probably come to this with an extremely outdated idea of what autism "looks" like - at least I know I did. The more I learn about the really broad range of challenges and opportunities that autism may bring for my DS the more cautiously optimistic I become because while he does need support in some areas, he's already showing me some pretty amazing ways to see and experience the world that I might not have had were it not for him being autistic. And I'm genuinely excited to see how his unique way of learning and seeing the world manifests itself in his interests and talents as he gets older. He's already a one-of-a-kind kind of character (in a genuinely delightful way) and I can't wait to see how that personality grows over time - those are my kind of people! The challenge, for me as much as for him, is about learning about what he finds challenging and why (especially sensory issues), and helping him find a way to make those things more manageable for him so he can get on with the other amazing stuff he's doing.

I think the more you learn about autism, the more you find that you need to throw all the scary stereotypes you've heard in the past out the window and focus on the child in front of you, as an individual, with their own unique gifts and challenges. No child, neurotypical or neurodiverse, neatly fits a checklist of personality traits and behaviours, and gradually, hopefully, more people are learning that this is also true of autistic children.

Hi, I thought I would do a little update since so many lovely people took the time to reply to my post

In March I took my son to the GP and he said it was most likely a tic disorder he had. He spoke about a few related conditions but said he didn't see any red flags for ASD, ADHD, OCD etc and so he made a referral to CAMHS as tic disorders are also associated with anxiety.

We then had a Choices appointment with CAMHS but they don't feel they are the best place to help us. My son is still doing these repetitive tic-like movements but as they are not severe or debilitating they can't help. The nurse did say he has a few autistic traits but nothing that was really jumping out at her but she would refer him to skylark for ASD assessment if we wanted to so we have said yes to this. But she did say there are no guarantees they will accept his referral.

Does anyone know what happens next? If they accept the referral will there be an initial appointment to see if he meets the criteria to go ahead and go on the waiting list for assessment or will he just be put on the waiting list and we won't see anyone now for potentially a couple of years?

Thank you again for all the support I was given it really was invaluable at a tough time x

Hi everyone , this seems to be a lovely kind thread ! My little daughter is showing signs of autism and developmental delays - what I’m struggling with is blaming myself for it thinking I caused it . Did anyone struggle with this or just put it down to genetics and out of our control ? It’s really affecting me , thank you

@Diadhuit85
Please don’t blame yourself.

My son was quite obviously neurodiverse from conception - he is still the same bouncy hyperactive zany wonderful child he was in the womb.

Since his diagnosis I’ve been diagnosed. On reflection, my family on both sides are a pretty zany bunch… and in my DH’s family there are a lot of traits there too.

I didn’t drink or smoke when ttc, I took the most expensive vitamins, ate obscure posh fruit and granola, I probably could have done with more exercise and less stress but couldn’t everyone?!

We did our best. It’s exhausting and counterproductive to rake over every little decision and circumstance you faced throughout pregnancy and post birth trying to examine which needle in the haystack contributed to the formation of your little girl the way she is.

Your daughter is not any less valid than any other person. She will have strengths and weaknesses just like everyone.

I am autistic. And I am probably ADHD too. I have friends, a husband, children, a home, I have multiple first class qualifications. I did alright!

What I lacked in my early life was support and understanding. I would urge you to pour all the love and kindness into your daughter as possible. Tell her she is important. Tell her you love her. Tell her she is capable and can pursue her dreams (even if those may need adapted).

If you have a diagnosis you have protection from discrimination (at school, at extracurricular, at work etc), support and adaptations with education, work, travel, entertainment, healthcare (virtually every part of life will see benefit), potentially financial support via DLA/disability grants, greater pastoral care, healthcare support…. The list goes on.

I wish I had had all of this before I was pushing 40. My DC has this and I have no fears for him except that he be broken down like I was as a child… but that isn’t going to happen because I won’t let it.

Your daughter is beautiful and she has potential. Help her and support her to shine in every way that she can and give her love just like you would any other child.

Yes it is hard to get the support in place but if you muscle on through the medical/school stuff you will have given her the greatest gift.

Please be kind to yourself, this is in no way your fault, and your daughter is no way faulty 💐

@SensationalSusie thank you so much for this ,
that’s exactly what I’ve been doing , raking over everything I did while pregnant and it’s pointless and soul destroying . She’s a gorgeous little girl ,
thank you so much for your message it’s really helped me x

Hi there, I read your post and your little one sounds great!!!! He is now 7? I hope he is continuing to thrive - it certainly sounds like he has the best support possible in you! I am writing this as I felt so moved by your words and how clearly they spoke of the worry and anguish that I am feeling too but would not be able to put into words. Thanks for your post and all who replied. I wish your son's tics have resolved and you have left your worries far behind, never to come back! Xx

Hi, thank you so much for your message that was lovely to read, such kind words thank you. Yeah my boy is 7 now, he's doing great academically and he's come on so much socially, building friendships which has been heartwarming to see. He still has the odd tic, mostly lots of eye blinking and fidgeting when he's nervous or excited but I've come to realise that I notice it a lot more than anyone else does so I've stopped worrying about it as much for the time being. He's happy and trying new things and I'm feeling more settled now than I was when I started this thread, thanks to everyone for the advice, encouragement and support it really did make all the difference x