Autism diagnosis or not?

[bobstersmum]

Ds just turned 7. Was referred age 2 for autism assessment due to hand flapping. After a year of all sorts of tests he was discharged, we were told yes he does have autistic traits but so far he's not held back by it. Fine. Then he started school and reception teacher noticed other things that I didn't notice, mostly that he takes language very literally, this causes problems most days. However the senco at the time stated that as he gives eye contact he couldn't be autistic. Fast forward a little, he's now in year 2. We have had him coming home in tears several times since September as he does not understand certain things the teacher will say. It's usually when they use metaphors but jokes and sarcasm as well just upset him, it's like he can't process it. There is a new senco now and they recommended that he was re referred, his first appointment came through very quickly and its in just over a week. Ds is very clever but tells me he struggles at school because of the language thing, he's started to get upset about going. He is difficult to get to sleep at night and will sit and cry his heart out because he says he can't get to sleep on his own. He shares a room with his brother so he's not alone but he breaks his heart at being in his own bed so usually ends up in with us, he's out within seconds then. He doesn't eat much, will only eat dry foods nothing moist, won't eat meat. Doesn't understand when it's a siblings birthday it just breaks his heart, makes him sound like a spoilt brat that I know but it's not like that, he just can't cope with some of his emotions and doesn't understand certain things. If we tell a story about when he was a baby or little if it's something funny he can't laugh at it he breaks down because he thinks we are laughing at him. We literally have to watch what we say all the time. He's a happy boy aside from this, if things in his little bubble go as he expects. The reason I'm posting is I think we need support or some sort of help to help him? I don't want to have to explain every year to his new teacher about his little quirks and funny ways. His teacher this year said she hadn't noticed anything about him, this is possibly because he just fades into the background in class, he doesn't make a fuss hes just quiet and saves all his frustration for when he comes out of school. He still flaps and also has some little tics as well. What do I do? Do I push for some help /diagnosis or just let them decide? I'm scared that my lovely clever boy is going to be left behind at some point, possibly when he goes into juniors but most likely when he goes to secondary, I really think the massive change then will be too much for him. I just don't know if I'm over reacting.

You aren’t overreacting op and you sound like a fantastic mum

In theory support should be based on need rather than diagnosis, but in my experience the diagnosis makes a big difference (I have a dd with ASD)

I would sit with paper and pen and make a note of every little thing...all the traits you’ve noticed and all the difficulties he has. Hand the list over at your appointment and don’t be fobbed off.

Thank you Leek, I have made a list in my phone and been adding to it since December of any little things that pop up. I am really hoping this is the last time we have to do this, he's so upset even at the idea of going to the appointment because he does not understand what it's for. He had a small operation last year and I will never forget how terrified he was in theatre when they were trying to get the cannula in he had a total meltdown it really was horrific. I can't make him understand that this appointment will not lead to another operation! He's such a special lad he really is gentle mostly, it breaks my heart to think of him confused and struggling.

Just a handhold. I have a 6yo clever DS with all kinds of stuff going on awaiting ASD assessment. Lots of similar issues, some different too, very tough. up

That 'gives eye contact so can't be autistic' thing really winds me up! My son didn't get a diagnosis until he was 13 because of mis information and ignorance from teachers/SENCOS like this! My son dislikes giving eye contact and will avoid it but can do it. It's a spectrum and they're all different, it's not a one size fits all. We needed a diagnosis as my son was struggling massively at school and was constantly being excluded. He's now in a special needs school. I would push for a diagnosis if he's struggling so much.

The eye contact thing really frustrates me - I can do it, so can DH and other diagnosed family members and friends. Admittedly it is uncomfortable and distracting, and I had to learn how to do it well, but I think that can be true of anxious non-autistic people too.

If it were really important then no other assessment would be needed - just "do they make eye contact or not".

7 is quite a common age for ASD traits to show up. Is he y2? My DS had a horrid year with the pressure of SATs compounded by undiagnosed but blatently obvious dyslexia (and dyspraxia). (My NT y2 is also having plenty of "moments" anyway, but not like a ASD type meltdown)

I went to the GP with a very detailed mind map of all his "quirks" and history and he got a referral and a diagnosis about 15m later. Mine masks well in school and I get the fallout at home. It's not obvious in that he is articulate (despite a history of SALT, and actually quite adult in his style which is a subtle clue) and another common "clue" of eye contact, it's not that he doesn't make it, it's more that it's fleeting, distracted and tends to settle on a "safe" person or the subject of his talk. Making some kind of eye contact is not a reason to dismiss ASD, and you have plenty of traits to make a referral well worthwhile

Don't think of it as asking for a diagnosis. All you're doing is supporting an assessment. Provide all the information that's asked of you and wait to see the outcome.

It sounds very much like he has ASD and a diagnosis will help him understand himself much better as he matures. Children with ASD tend to become more different from their peers as they get older so things are likely to get harder for him in school. The right support in school could make a big difference to his quality of life.

You're not overreacting.

My ds has diagnosis of ASD and gives eye contact. Not all people with ASD struggle with eye contact. Its a triad of symptoms, social communication, social interaction and social imagination .
You are not over reacting, you are doing the right thing. As a pp said, a diagnosis helps with supports and also saves all the explanations each year with new teachers.
Best of luck .

Two children with ASD here. My eldest started presenting in year 2 because a step up independence was required which she struggled with. Diagnosed aged 8.
My youngest is very different. Had suspicions at age 7 and diagnosed aged 9.

If he is then the sooner he's diagnosed, the better for him.

When we were going to talk about why we thought our children were autistic, we looked up the "Triad of impairments" and have examples of how they matched up with some of these impairments.

We also me ruined the meltdowns and the special interests and the tics.

The ‘laughing at him’ feelings is 100% my DS too, had his diagnosis in December, I want to make sure he gets support when he goes to secondary school and beyond.

Y2 was when someone independent picked up dd's ASD.
He'll still be your lovely boy. Diagnosis and adjustments just mean he gets a bit more space and help to get where he needs to be. Dd is in mainstream with an EHCP and is predicted good grades at GCSE so we have a lot of hope :)

Bless him. Sounds like he’s really struggling.

It’s far FAR better to get a diagnosis and get to the root of why he feels the way he feels (and why he finds so many things difficult) and access help and support.

The keeping a list of behaviours on your phone is a great idea. I’ve been doing that with my older child (the younger is definitely autistic, although still awaiting diagnosis 🙄) because I’ve had niggles for a long time that she’s different.

I feel for you. You obviously want the best for him and you know him so well. You’re already making tons of adjustments to make sure he’s happy (keep a note of that stuff too, it’s relevant) and it sounds like you’re doing a brilliant job fighting his corner already

Also want to give you a hand hold, my lovely boy is now 19, he was given an ASD (Asperger) DX aged 6.
We worked really hard and got him lots of support (back then it was called a statement) I also did a great course with the NAS. It really helped him in primary school in so many ways.
As he got older his needs became less and we moved schools and gave up a lot of his support.
We had many tricky times, but things changed so much and as he got older he got to a point where he decided if he told people of his DX or not. Most of the time he doesn’t tell people, he’s quirky but he doesn’t feel the need to be defined as having a DX.
He’s come such a long way and I’ve never regretted getting his DX.
Your boy sound like a lovely chap, you need to do whatever you think is best for him now. Don’t worry about the future.

My DN will be 5 this year and can barely speak.
She was sent for testing at 2, she would hold herself really stiff and do odd movements with her hands and fevers and her eyes would wouldn't drag focused.
She also points with her middle finger and is very very particular about what she is wearing and what does not want to wear.

Although they said she has autocratic traits she has never been told this so what she has. It's a joke.

Didn't mean to put fevers

Omg I made so many mistakes. I am half asleep so sorry!

Drag - Stay*

Autocratic- Autistic*

Also forgot to say my DS had always given eye contact.
I’d recommend looking on the NAS website which will explain a lot about symptoms.

Echoing what PP said. School was quite sceptical of my concerns because both my autistic DC were 'managing', as in not misbehaving and more or less keeping up academically. I pushed for assessment (not sure myself if it was ASD, but knew that something was going on) exactly because I could see that they would be struggling in later years. Now they both have a diagnosis and suddenly the SENCO is willing to make adjustments, even though their behaviour and learning is the same. But things that were dismissed as them being naughty, a bit odd or just not that academic are now (rightly) accommodated as ASD traits. And that has brought the tension they used to release at home down a lot.

I’d say you need to go down the diagnostic pathway again too, so that you get the right support as he moves up the school and onto secondary. My dd gets anxious and confused when she doesn’t understand and this affects her sleep hugely.

Yes we moved one dc to a school that supported her better and saw a huge reduction in anxiety at home.

Thank you so much for the replies everyone. It really means a, lot to know I'm not on my own in this situation and that I'm not over reacting. I will look on the NAS website. I was discussing with dh about what we want from his appointment, and we do both agree that he needs to be recognised, it's so difficult trying to catch the teacher to relay his worries and struggles and explain how they've upset him, they are usually very dismissive. If he was diagnosed where does the help come from? Is it school or will he stay under the consultant? I really don't know what to expect tbh. Last time we had the full assessment and the big meeting with the Dr's and nursery staff there etc and I found it really daunting sitting there being told what they'd decided. I can't see ds sitting in a meeting like that age 7 and being OK with people discussing him, he'd definitely get upset.

At 7, your DS would not be expected to sit in any meetings that would upset him. Just express those concerns at the time.

The assessment should involved several different professionals, some of whom will make recommendations for his support in school. Depending on the level of resources that support requires, the school should either put it in place or apply for an EHC Needs Assessment so they can have additional funding.

Hopefully you can see my screenshot? There's a cartoon book written by someone with asd showing what people say/mean with idioms. It's a quick read, so worth getting from the library and my ds found it funny.

My lovely ds (diagnosed at 11) communicates /masks at a level where he seems 'normal but can be a bit rude' struggled with rhetorical questions. 'Would you like to start your work now?' 'no, not really!

The psych explained the asd to my ds in a really positive way, something like' congratulations, we've found you have asd. It explains why you are so good at xyz, but also why you find pqr more difficult. Now we know we can support you. " so it seemed like a good thing.

@leeloo1 that actually made me laugh and cry at the same time, what a lovely way for them to explain it to him! And the book looks fab too thank you.

My daughter, through having been to drama and LAMDA classes since the age of 3 has learnt to fake eye contact.

We were told ds couldn't be autistic because he has empathy. Yes, he does, but he has no social awareness at all or how his own words and actions can affect other people.