Autism

[Mum2fourx]

Hi there,

Before I say anything I just want to stress I am not trying to diagnose my son by myself, we are waiting on the doctors for help but I am going crazy worrying about him so wondered if anyone experienced anything similar, maybe an autism diagnosis or told that it was something else.

My son is 6, he is my life, along with his siblings. We have always been a close loving little family, just me and them. I have always noticed he was a little different, but my thought was - all kids are different they all have their own personalities and little ways.. as a baby he was always sound sensitive, loud tv/shouting would make him cry and cry until I held him and the noise stopped. Other than that he was my only child who didn't want to be held 24/7, and that was ok he didn't hate it but he would want to get down as soon as he could and things like that. As he got older the tantrums started - bare in mind I had 3 older children so I had already seen my fair share, but this was different - he would sometimes get so frustrated or angry he would pull his hair (never ripped it out but would tug at it), if on the time out step he would scream - not just a cry or just a little bit - I'm talking full on screaming, hit his head against the wall or turn and do it on the step. He would also absolutely freak out if we were out and he couldn't do something, he would bite his siblings really hard. He was also a little slower to speak, he could speak don't get me wrong, but he was definitely slower than others his age, health visitors told me it was fine he would get it and all kids have their own pace.

So, he did start speaking and as he grew his tantrums got less, he is really a very calm child, just keeps himself to himself, he likes to sit with his brother or sister and doesn't like being alone. When however, they have a sibling squabble he gets very very frustrated and will at times hit them, then as soon as he has he will break down crying and get very very stressed that he did that. Because of how sensitive he is he is rarely told off because I know he would get so so stressed and upset.

Sorry if I have rambled, but because he isn't disruptive at all I feel he is falling through the cracks of the system. He has been seen by a psychologist through school and she suggested he needed sensory testing - this was 6 months ago and his new teacher didn't know anything about it. I am so torn and the internet tells so much different information..

So onto things that I have pinpointed about him

• INCREDIBLY sensitive
• Overly touchy-feely, he has to be touching, cuddling - he does this with me and his brother and I was told at a meeting at school that he does this to his friends arm, strokes his jumper or hand etc
• He is very sensitive to loud noises, toilet flushing, lots of children chatting, hand dryers - its like sensory overload for him and he puts his hands over his ears when it gets too much
• He is extremely attached to me, he wants to know where I am in the house at all times, desperately doesn't want to leave me to go to school and always coming to check I'm around cuddling and kissing - if someone is speaking to me he will sometimes come and stand in front of me (if I am sat down and hold my face try to get my attention.
• He is really funny with food, gets anxious about what is for lunch/dinner and refuses to eat things together, so he will eat chips, then chicken, then carrots
• Likes to speak and behave like a baby sometimes
• Finds comfort stroking or touching toys or people
• Takes things quite literally
• Always leaves it to the last second to go to the toilet - sometimes to the point where he misses the bowl - its like he is so engrossed in what he is doing he forgets or doesn't feel it
• He is super clumsy
• He has extremely bad fine motor skills - we are doing everything we can to help him
• He still can't read, or write very well
• He forgets things if he doesnt repeatedly do it - unless it is something he likes - then he learns all he can about it - like science in school and he will talk and talk about it
• He loves numbers - he cant write them but he counts all the time - and when I say its 5oclock - he will count to 5, if its 6 he will count to 6 and so on.
• He is so anxious. School makes him anxious because class and people are too loud and rough and he genuinely gets distressed by this.

There is more but I feel like I have written an essay - I'm sorry I just want to know he is ok and I am doing all I can do to help and support him..

Thank you for taking the time to read this.. any advice or anything will help..

Have you managed to get something arranged for the sensory issues? Was the psychologist an educational psychologist?

I would check with the school whether they have made a referral for him, if not then you could get that ball rolling through your HV or GP.

I would also be requesting a meeting with the school to ask what support is in place for him, given the psychologist report. (They should be able to give you a copy of it.) Even without a diagnosis of anything, if he's struggling in school (or at home, as a result of holding everything in at school) they should be able to put things in place to help him. But you will need to be in regular contact to make sure it's happening.

Thank you for your replies, I really appreciate it!

So, regarding the sensory testing - his class teacher and I spoke regularly throughout year 1 about his learning, she never mentioned to me about the touching - possibly didn't know how or what to say to me? Either way it became clear that his fine motor skills were not developing as other children, and he was incredibly sensitive and disliked boisterous behaviour. She made the suggestion to have a child psychologist come into school and observe him - he was observed over 2 days and then I was called in for a meeting. She told me he was incredibly kind and caring, if someone was upset, he would look after them - which is not typical of someone with autism - although from my research (of course this is google so I take it with a grain of salt) stated that there is a huge range on the spectrum, some not being diagnosed until adulthood and not really having many common symptoms at all. She did note the touching and that's when his class teacher said that is daily and even when he is asked by a teacher to stop, he does but then will go back to doing it - she noted his friend didn't mind but I am so worried this will become a problem as he gets older.

The psychologist recommended sensory testing on him, she did say this wouldn't be straight away and that it was only 5 weeks or so until the end of term so would be in his new school year. When I met his new class teacher i asked her, she didn't know anything about it, and every day I will ask if she has heard anything more, she says no and then I was told last Friday that it will be a while as they are snowed under at the moment, and they will get round to it when they can. I had already contacted my doctor and was given a phone appointment for the 6th of December. After speaking to school again I tried to move this closer but was told it wasn't possible.

Although this hasn't been done, they do try with him, he no longer has to go into the classroom first thing, they arranged for him and some other children to be dropped off in the library in the morning to give them a chance to settle. This is amazing but it doesn't help, he still struggles with me leaving and panics about the day ahead. Today I received another call to say he had collided with another child and had a nasty fall, he has a decent sized lump on the back of his head, grazed and very sore. He is a petite boy, and he really can't cope with loud boisterous behaviour, so this will now be even harder to get him to school tomorrow.

It is breaking my heart; I know something isn't right. I have ordered some sensory things for him for home, and he takes in a cuddly toy every day to school. Not sure what else I can do, of course I will speak to the doctor and see what they say but until then it is a really distressing time.

It sounds like things are in progress, it just takes a really long time, unfortunately, the waiting lists are long. Did the psychologist say that the looking after upset classmates wasn't typical for autism? That's certainly not my experience (autistic son plus work in a school with both mainstream and ASN classes).

What about social stories and comic strip conversations to help prepare him in the mornings, as well as his transition toy and the library start? It might help pinpoint where the problems are for him. And lots of visuals at home and in school. The National Autism Society runs really good courses called Early Bird Plus and Healthy Minds, it might be worthwhile seeing if any run near you. I found them so useful and really helpful.

I hope you have a smooth morning. I have been there with the struggle to get into school, it's so draining. 💐

Sounds a lot like my daughter who is on the waiting list for assessment (29 months to wait!)

He sounds like he has "Sensory Processing Disorder" but I'm not sure they diagnose that on it's own, It's generally a co-morbid of another condition. We are in limbo with my 4 year old because of this, He has it but it's part of a bigger condition.

For Autism to be diagnosed he needs impairments in the triad of impairments, Communication, imagination and Social (interaction/ communication) does he has these?

That is so interesting as I have been reading about sensory processing disorder too, he has pretty much every symptom of that. I doubted autism until a new mum friend mentioned her son was autistic, he is extremely similar to my little boy, and she asked if I had ever considered he might be. I guess it is a waiting game for the professionals to figure out. Just the waiting and worry is horrible.

I have ordered a couple more sensory toys for him and the game Operation as I am hoping that will help with his fine motor skills (will be keeping the batteries out as I know the noise will bother him. I also do yoga with him every afternoon after school - he hates sport as it is too rough, and he doesn't like when people bump into him - he loves yoga, and it seems to be relaxing for him.

This morning was the same, crying, shaking, repeatedly saying mum and not wanting to let me go. It is so hard leaving him there like that, he looks utterly devastated and I feel so mean just walking away.

As for the caring for others, she didn't say, but from what I have been reading it seems he would not have that behaviour if it was autism - but then I have read others that say more about the sensory processing disorder and how it can be linked to autism. Feels like I am drowning in a sea of information and all I care about is making sure he is ok.

He could be very caring and have autism, but it may take first hand experience for him to fully understand the emotions involved in a situation. The emotions are there.
In basic terms he may know a joke can make people happy when said, but may not understand telling jokes all through funeral is inappropriate. The idea of different social logic for different situations is hard.

Mr Bean falling over is funny, but laughing when great grandma falls isn't? Different rules.

SPD is a comorbid condition so autism + spd is more than possible.

My son has ASD and displayed lots of those behaviors
If you are on the assessment path I would just assume thats what it is and parent accordingly.
Some off the top of my head suggestions for you
ear defenders for noise
visual timetables for your day to day routines, we also had weekly and monthly calenders which we updated every Sunday and checked every evening so he knew exactly what the next day looked like.
work on the gross motor skills first - until he’s got those he won’t master the fine motor skills
don’t worry about things that really aren’t important - so what if he goes round the plate eating each item in turn, at 18 my son still does that, it might be odd to you but it doesn’t impact anyone else so let him get on with it.
think about having a strict routine around food - my son had the exact same packed lunch at school for years, ham and cheese sandwhich is still his preferred option. for many years we had the same food on a strict rotation - spag bol Monday, chilli Tuesday, pepperoni pizza Wednesday - we are a bit more freestyle now but he still gets twitchey if he doesnt get fish n chips on Fridays. Add it to the calendar so he knows
the soft toy is great but how about a note from you in his lunch box every day so he knows you are thinking about him, or a key ring with your photo he can attach to his bag.
the repitition of stuff till he gets it is just something you have to do - its hard on you though
Personally I would focus on getting on top of the anxiety - an anxious child cannot learn,
try a weighted blanket, my son didnt get on with them but he does have a huge snuggly blanket which he wraps himself up in - serves the same purpose
My son is adopted, he came to me when he was 8, seriously behind in school, below national currciculum level, anxiety through the roof. As I got a grip of the anxiety and he started to settle, the learning got better. He got a decent enough bunch of GCSEs, we are looking at university. 10 years ago I would never have imagined that.
I never gave too hoots about SATs or where he was in relation to other children - as long as he was learning and progressing that was good enough for me. Some years he made huge leaps when somethings just clicked, other years progress was much slower but steady.

on the caring thing - my son is 18 now and a lovely caring young man - he’s just brought me a cup of tea as I’m in bed poorly. But this is something that I have worked on with him.

yoga sounds lovely, this is the sort of imaginative parenting that will really help your son

Thank you all for taking the time to reply to me, makes me feel less helpless in this situation.

Another extremely bad morning - we went to the library as usual; he was already anxious and worried, no one was there.. so, we waited, teachers saw us (3 to be exact) and not one came to the door to ask why we were there or let us in from the cold, the library was open and lights on, but we couldn't see inside. After waiting for 10 mins making myself late for work and both freezing we walked back to the classroom - my son crying as we walked back, the teacher informs me when we got there that Fridays there would be no library (didn't anyone tell you? To which I replied no.. why would I go and stand there for 10 mins, upset my son more and be late for work??) She apologised and went to take my son in... this made him freak out, he got incredibly upset and started screaming mum/mummy over and over trying to get to me.. heart-breaking to say the least. I am so upset they started this club he was trying to get used to and now Fridays it will be classroom - he isn't a fan or changes - especially not knowing about them.

Thank you for the advice and for your experiences, it really really helps. I am seriously thinking of going private for him, although I don't really have the funds to. I seriously welcome all advice!

There is a special needs chat board OP, I've been looking around it but not confident enough to post yet, they all seem to know each other quite tightly.

I've had similar problems with my 4 year old and school, his school are shit which doesn't help get him in. To the point where I'm thinking of pulling him out and homeschooling. You certainly aren't alone in this situation.

It's a 4 year wait for an NHS ASD diagnosis where I am due to Covid backlog. It isn't a quick process. You are best to look into and try different tools and approaches used for children with ASD now it won't do any harm. You can buy sets to use at home from Etsy, things like routines cards.

The class teacher may not know which interventions are being arranged externally, that is the job of the SENCO and that's who you need to speak to.

As for the library club changing that's likely a staffing issue due to sickness absence lots of schools have staff off at the minute.

Have you tried telling your DS what you do after you drop him off? Make it boring so he won't want to come with you buy once he knows what you are up to he might settle better.

First of all, it sounds like you are doing a tremendous job with your son. From your description, he sounds very like my oldest child who was diagnosed with high functioning autism at aged three and a half. Like you, I worried myself sick about how he would cope. School was a nightmare for him and he would be physically ill with anxiety. School tried but the harsh reality is that mainstream school cannot cope with autistic children. The staff are not adequately trained - no fault of theirs - that's just how it is. It is also a fallacy that autistic kids can't show empathy. My son is a very loving, sensitive soul who always stuck up for the less able kids and always, always faced up to any bullying. Hang in there. It sounds like you are on a pathway to diagnosis. And, I am happy to report that my son has now left school and is absolutely loving his apprenticeship. It will all work out. Your son will find his tribe. Sending hugs.

Has he been referred to an Occupational Therapist? They are excellent with sensory needs.

In my experience I found the paediatrician excellent in unpicking the difficulties ds1 had. The GP referred us and she then referred us to different professionals who reported back. She then considered all of these to make a diagnosis. In my understanding any medical conditions (Autism, ADHD, etc) need a medical professional to diagnose.

I wouldn't rule out ASD, dyspraxia or dyslexia from what you've said OP - or even all three at the same time as he's ticking several boxes IMO. DS was diagnosed with ASD and dyspraxia they're all linked (ADHD, dyscalculia etc too). For dyspraxia I would recommend swimming lessons and learning the piano (if he's at all interested) as I think both really helped ds.

Taking things literally is a big tick for ASD - if you have some examples where he does this then make note of them. You say he isn't a fan of changes especially not ones he's not aware of - and he gets very upset sometimes when you leave him at school - struggling with transitions is typical with ASD - I'd note any examples of that down too (on top of all you wrote down in your earlier post). High anxiety/very sensitive is typical too. Finding the unknown stressful is typical - he could do with a timetable perhaps so he always knows what lessons are going to happen on that day, when lunch and break will be etc - things do sometimes get swapped which might be stressful for him but it could help - I'd talk to school about something like that. Feeling prepared and like he knows what is going to happen will reduce the stress - a TA might even be able to go through the day ahead with him first thing - but depends if someone is available.

Mine wasn't diagnosed till 10 when the social issues became more obvious, but I'd say yours is ticking a lot of boxes for ASD even if he's not having obvious friendship issues yet - not clear how he copes socially from your posts unless I missed it. THe Friday change though is obviously going to be a disaster for him - very poorly thought through by the school! Schools often don't seem to have much idea about ASD IME. Keep talking to them, keep reading up on ASD, dyspraxia and dyslexia, keep noting down anything he struggles with or may be relevant and keep fighting for him. x

Could you afford to go private? We took DS to the Lorna Wing centre and it was about £2.5k for the assessment. Absolutely worth it because it forced the NHS to creak into action.

My DS has 1:1 at mainstream school and a very detailed EHCP. His diagnosis is ASC, SPD, dyspraxia and ADHD. The middle two are comorbidities.

btw OP I know you didn’t mean it this way, but suggesting that autistic people don’t comfort others is very ablist. Would you say that about Chinese or black/white people? I hope not! DS will ALWAYS try to soothe crying children of any age, but if they’re loud he’ll trot off to get his ear defenders first.

I am so sorry if it came across that way, its just what I have been told over and over about my son that he wouldn't be the way he is if he did have autism, I wouldn't ever mean to offend anyone I am completely new to this and just trying to learn and help my little boy.

It’s astonishing how much ignorance is spouted about autism OP, even by those supposedly knowledgeable! The “no empathy” thing is such a harmful trope. Autistic folk I know are some of the most empathetic in the world but they may not show it in the way we NT’s expect.

Bit I’ve been exactly where you are OP and I promise it gets easier. IF he’s ASC then it’s going to be absolutely fine - he’s still your lovely boy.

Thank you everyone again for the advice, help and sharing, it has helped me so much and I will continue to push and do what I can to help him, I have purchased more sensory toys, we have made a weekly planner board and he is helping put our routines on there, he is really enjoying this. I am also looking into getting a cat (he loves animals and the feel of their fur - I am not in a position to get a dog at the moment but plan to as soon as I can as it is all he asks for - a dog and a cat please mum), also the weighted blanket is on the way along with a weighted vest/fleece which I hope will help while he is at school. He is a happy loving little boy at home I think my first task is help with his anxiety while we wait and pursue the correct avenues with the school and healthcare professionals x

Again, I am so genuinely sorry if I said anything to offend anyone, I didn't mean it that way at all I am not the best with wording so just sincere apologies this is all very new to me and us as a family, learning as fast as I can.

In my experience you need to keep on at the school about referrals. Email the SENCO and ask if they've referred for an autism assessment.

Have a meeting with the teacher and SENCO and get a plan for him in writing.

Exactly - it's the expression of empathy that's often different enough to be perceived as "absent", not the empathy itself. Of course, this isn't required for a diagnosis, and neurotypical-adjacent expressions of empathy can be learned (I did).

OP - it's worth bearing in mind that a private diagnosis doesn't have to be horrifyingly expensive. Relatively-speaking, of course. When I was hunting around for an adult diagnosis, I saw figures ranging from £1500-3000, which were way beyond what I was willing to spend.

I did, however, find a few for under a grand, and went with one of those with qualifications and a track record at least equal to the more expensive options. While child diagnosis is a slightly more involved process, I suspect you'd be able to find one that's in the ballpark of £1200-ish, should you want to shortcut "the system".

Also - if you have private healthcare provided by an employer, it may well cover private diagnosis costs (apparently Bupa Benefit 5 will cover assessments, although you may have to pay extra on your premium to cover family members...?).

For what it's worth, it sounds like you're very much doing all the right things. I see a lot of my own early experience of the world in your description of your son's experience, and just the fact that you recognise his differences without trying to "correct" them beyond the harmful speaks volumes.

The only thing I can think of to suggest which may help (if space allows) is having a quiet, dimly-lit space in the house where he can be apart from everyone else when he needs a break. I can't speak for him, obviously, and all autistic presentations are different, but as somebody who grew up with three younger siblings...our house was loud, bright and chaotic a lot of the time - I didn't have my own bedroom between the ages of 4 and 10-ish, and I'd become extremely stressed when I couldn't hide from it.