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.

I'm glad it's some help @bobstersmum, I was really resistant to the idea of my ds having asd, but having acknowledged school were worried we had the assessments done privately to speed the process up. I'm glad we did, as in y5 and 6 his 'coping' became less successful, but with the confirmation of his asd school are more supportive and we can push for understanding where its needed.

People often get confused between cognitive empathy and affective empathy - my dd hates seeing people in any kind of pain (affective) but has little how someone else might feel in their head in a certain situation or that she could be the cause of someone feeling angry due to any action she is taking (cognitive).

Probably not people on this thread but I’ve also been told repeatedly how kind my dd is, as of this is some kind of pertinent information meaning she can’t have asd.

It's annoying isn't it that it's often dismissed because of certain things they can do such as eye contact, empathy etc. I look back now and wish I'd known more and pushed a little in the first place. I am going to be firmer this time and make sure my ds gets the support he needs. Dh thinks they maybe don't like to diagnose because it ultimately costs money, he could be right, and some will say its better not to be diagnosed so they aren't labelled, but I think that's ridiculous, you wouldn't suffer with any other condition affecting you daily would you?

Argh posts like this make me so mad. Not you OP but the nonsense you get told. My DD has been diagnosed aged just three. She makes great eye contact with people with whom she is familiar and comfortable with. She also appears to make eye contact with others and you wouldn't know that she isn't unless you know her well. She looks at peoples brows, or the bridge of their nose. Eyes flit away a lot.

She also speaks amazingly and to an uneducated outsider appears perfectly 'normal'. So many people say 'of she can't be autistic' or 'oh she must just be high functioning then' and it's rubbish (she is high functioning I guess, not to take anything away from those who have much worse struggles than us but the term high functioning irritates me because it makes out that it's really no big deal). She struggles so much in preschool etc. Like your boy, she doesn't get metaphors, sarcasm etc. She is the most literal child I know. I called her a 'lucky little duck' the other day without thinking when she was given a gift by my mum and she cried, saying ' I am NOT a duck Mummy, I do not have a beak!!'

Poor kids. It certainly sounds like your son had traits and seeking a diagnosis can only help to be honest. We're extremely fortunate to have one so young. The sooner you know what you're dealing with the sooner you can help.

With regard to diagnosis/labels etc it's important to remember that ASD is a neurodevelopmental disability. These children are disabled. No, not in the same way that a child in a wheelchair might be for example, but it is still a disability. In no other area of medicine would you be encouraged to not seek a diagnosis for a disability and to then have the help needed to manage that.

Yes it costs money. It costs the NHS, and it costs schools (and you, to some extent usually). But your child has a legal right to education, the same as any other child and schools are obligated to ensure that he receives the support he needs to obtain this. Obviously it's never as cut and dry as that, there are hoops to jump through. We've just submitted an EHCP application for my child and to be honest if was painful. Such a long, slow, complex process. But it will be worth it in the end when she is well supported in school.

Being on the pathway to diagnosis will open doors for his needs to be met, so I would say it is well worth pursuing. My dd was dg in 2018 while having issues at school and with limited support given. Dg made it mandatory for the school to put support in place academically and give her some leeway at school, such as events and participation. She has came on really well since then but due to recent events that have set off her anxiety and autism related coping mechanisms we visited the gp today to discuss it and psychiatrist referral has been made. I don't think it would be made so easily without her dg's and I don't feel bad about it even if cahms are under a lot of pressure atm.

It is tough going through the process emotionally and initially the dg knocked me even though I expected it, initial referral was for add but through the yrs and her development it became clear other things were going on. It will be tough op but it is worth it once you are on the other side.

My dd makes eye contact and is sociable although her eyes do divert, I wouldn't take that as an indication that she doesn't have asd. What narrow thinking .

I think the ‘being labelled’ worries some parents, but in my experience I found it quite powerful, it brought help and money into the school to help DS and the whole class benefited from that extra help.
It also meant I took being his advocate seriously, I knew what his issues were and made sure I stood up for him, we did have to fight to get the funding but it was all part of the process. Once the funding was in place things really improved.
However once my DS got older and his needs were very different it became his decision as to how and when he used this label.
He moved to a private school for 6th form and we never told them about his DX as he was coping very well and didn’t feel it was necessary and he chose who he told ( he didn’t tell many) he’s not embarrassed, ashamed or worried about his DX, he just doesn’t see the need to bring attention to it as he functions as well as most other 19 year olds. It’s now up to him how and if he shares this information or not.

It sounds like he might benefit from seeing a speech and language therapist. You can ask school to refer or often you will be able to do it yourself. They could assess his needs (he might struggle with things which aren't immediately obvious to people around him which a formal assessment and/or observation by SALT would show up), give advice to school about how to make things easier for him and possibly suggest interventions to help with his social communication.

@ThePurpleMoose the senco looked into that and apparently they said it wasn't something they could help with, that's what they told me anyway! I will mention this when we go to the appointment.

@bobstersmum it may depend on the referral criteria of your local service but I am a SALT and have seen children similar to your son from what you describe. If he says he is struggling at school he might have some underlying difficulty with higher level language skills even if he seems mostly competent on the surface - this can often become increasingly apparent the older a child gets.

You could always try phoning your local service yourself - I'm sure they'd be happy to chat it through with you to try and work out if he does fit their service criteria. We do this sometimes if we get a referral where it isn't immediately obvious that assessment is required but we need more info to make a decision.

The school can fund £12.5k of support without an EHCP. They will say that they can’t, but this is unlawful! He could certainly be referred to SALT under SEN support.

@ThePurpleMoose thank you! I will definitely give them a ring. It's so unfair that the school have basically tried to brush him off for almost 3 years now.

Thank you @Buscake I will tell them this.

This comic strip explanation of autism is worth having a look at:
themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

The thing about labels is that all children have them anyway - the good child, the noisy child, the happy child. In my DS case, he was the weird child, the awkward child, the child who hates football. Now he's the autistic child and I think that is a much better label, thank you very much!

OP you have been fobbed off at every turn and my blood is boiling for you. As a pp said, if eye contact was the only 'symptom' of ASD then it wouldn't take a panel of professionals to diagnose it!

One of the things I wish someone had told me was that you don't need a diagnosis to read up on ASD and use some of the techniques with your child. I stupidly waited till he was diagnosed to actually do anything. You can get yourself a few books, take a look on the NAS website and start using some techniques. If they don't work, no harm done. If he turns out not to have ASD, also no harm done.

Also please get yourself on the SN boards here. I don't post there these days but the boards saved my life when DS got his diagnosis.

Also 7 ish is a really common time for ASD to become more noticeable, because other DCs social and communication skills usually take a big leap forward.

Push for the diagnosis, if there's nothing he really needs right now that's great but if you have a diagnosis in place if he does need support later on it'll be much quicker to get it, plus you won't have to explain him yo every new teacher.

DD is 11 and going through assesments at the moment, I've known since she was about 2 that she was different to other children but because she was coping i didn't push, got to year 5 and she very quickly stopped coping, school have been great but don't have the funding and the school and I have had to really fight to get her any help, she would have been better off if I'd pushed for help early on, when we had time for the process to take forever.

Yes my dc1 took a big step down in coping about age 7, I don’t know if it’s something to do with having the ability to anticipate situations that make her uncomfortable.

The absence of a label is not the absence of being labelled - that’s completely spot on @LonnyVonnyWilsonFrickett

It makes me so angry when I hear of things like this. Kids with clear needs which are just being brushed under the carpet by the schools and medical services which ought to be supporting them. Parents being fobbed off and discouraged from seeking the help they're entitled to.

A Senco who thinks that a kid can't have autism because they make eye contact should NOT be in a Senco job!!

CAMHS refused to assess my DS for autism, despite him being referred by our GP and the referral being supported by his school. Out GP was appalled but said that this was happening more and more recently. Even if they'd agreed to assess him, he would have had to wait for 2 years before they even started the assessment.

We were lucky enough to have the money to access a private assessment. It cost less than £1000. DS now has a diagnosis and a lot of things have fallen into place.

(N. B. Some local authorities may not accept diagnoses unless they are made by the NHS... so be aware of this if you are thinking of going down that route.)

Some brilliant support and advice here thank you everyone! Our appointment next week is at our local learning development centre, that is where they do the assessments and that's where he went last time. We only discussed with the senco in December and it only took a phone call from me to the gp to get him re referred, and the appointment came through very fast so I'm not sure if they've fast tracked it since he was previously seen? I'm sure they will assess him again which might take a long time again or maybe it wont take so long since they've already got him on record. Will find out next week.

I wouldn’t assume you’ve been fast tracked. It usually isn’t too hard to get a paeds appointment (well, not in my experience) but we’ve still been waiting for an actual autism assessment for over a year with no sign of being anywhere near the top of the waiting list

I just remember from last time the average wait for an initial appointment was 8 months.

my cynical side says they're trying to get the initial appointment faster with the same or worse bulge further down the line to weed some people out of the system.

We had our appointment today and they have set the ball rolling to do full autism assessment. She said the whole thing will take a long time but at least we're on the right track.

Just heading out so briefly... wanted to say that I am a SEN TA supporting two children with ASD diagnosis. Both of them make excellent eye contact and indeed one of them relies on this for communication when heading towards melt down.