Late diagnosis

[Clairaloulou]

Sorry for the epically long post but I don't want to drip feed.

Are there any parents her whose child was assessed later on in childhood?

My son is 10. He had slightly delayed speech when little, but met all other milestones. No concerns re asd raised at school, but I privately had him diagnosed with dyslexia and dysgraphia last summer. He needs lots of extra help at school, academically. (Has a "my support plan just implemented in the summer at my insistence) He has numerous vocal and physical tics. He doesn't have any bad behaviour, but is prone to meltdowns. He gets overwhelmed a lot, doesn't like change and is very sensitive. Doesn't understand sarcasm and is very literal. Finds maintaining relationships difficult at times - gets hurt/upset by things that wouldn't normally bother someone. Will not sleep in his own bed.

This past year has been very difficult. He's stopped playing out, wants to be at home in bed, doesn't want to go to school, says he has tummy ache etc. He has brittle asthma too so that hasn't helped.

Yesterday he had a massive meltdown about going to school, it was awful. Worst yet. We were due at the hospital that afternoon and George thought he was having the whole day off, and so when I took him to school he broke down. It's kind of brought things to a head with me.

My dilemma is - are there elements of asd that warrant an assessment or is it anxiety/emotional type problems? He has been in and out of hospital since 10 months old with his chest, I have heart failure, our nana died 2 years ago which he is only beginning to process, etc etc so he has a lot on his little shoulders. I'm a single parent too so that obviously impacts everything.

Grateful for anyone's thoughts/advice/experiences.

[LightTripper]

I'm so sorry that you and your DS are going through this. It's a lot to process as you say.

It does sound like it could be something on the autism spectrum (although as you say there are other things going on that may well be contributing to anxiety). Difficulty with change, finding school overwhelming etc. is quite common. My DD was Dxed early but didn't want to leave you waiting - I know there are many on here that have had later diagnoses if you look through the threads. Also worth noting my DD was not speech delayed at all, so the fact that your DS was not delayed much doesn't rule anything out.

I think the first step would be to go to your GP and ask for a referral (I think they have to give one): it may be worth printing out the NICE guidelines. Sounds like your DS may have what is sometimes described (unhelpfully) as a more "female" presentation where the main outward signs are anxiety because he is "masking" very well at school, but the demands on him are just becoming too much to cope with.

Is school helpful? Have you discussed your concerns with them, or anything they could put in place to help get him back to a place where he is keen to go?

[elliejjtiny]

My eldest was diagnosed with asd aged 9 and I was diagnosed with dyspraxia aged 20. I would try and get a referral via your gp.

[Nettleskeins]

definitely worth pursuing a late diagnosis. Anxiety which is due to autism is so difficult to help unless you know that autism is causing the anxiety! There are so many strategies to improve anxiety in a child with autism that might not be implemented if you pursue a merely pyschodynamic approach. of course pyschological factors play their part, insecurities, bereavements, family dynamics but when you know that a child has uniquely sensitive wiring to certain situations it changes HOW you help them. Less talk more practical strategies.

Ds2 16 has Aspergers. It has taken us a while to get it right. He is happy in school now and has friends and is doing well academically (which I couldn't care less about except that it makes HIM happy and motivated). Lots of challenging family issues, but lots of lovely things in his life too. He has unique wiring.

[Nettleskeins]

I think in your situation, emotional factors will be taking their toll on him and he needs a lot of reassurance and talking through things. One of the most obvious things is not to mix up two different kinds of outside events, ie school AND hospital unless you are going to forewarn him, and preferably not do school that day if you can help it. Ds needed outings broken down into very clear first then after and made as simple and straightforward as possible. I find the same things difficult as him and would never willingly schedule more than one activity or errand into any day so I found it easy to understand that aspect of his personality, and work around it. Of course at the beginning when he was 8 or 9 there were lots of clashes in what I considered normal levels of engagement and what he could cope with.

I think if you reassure and accommodate him at this age, even if he seems clingy and demanding, he will get the confidence he needs for later on. Sometimess you have to fight their corner, and often that will mean finding that they cannot deal with things that other children their age seem to manage, and accepting it. A diagnosis gives you a bit more freedom to work with the difficulties and less judgement from professionals.

Not sleeping in his own bed - have you considered things like weighted blankets, lying down with him at bedtime, wedging his bed against the wall, tent bed. All those helped my child to sleep by himself and I think he was the child who co-slept the longest till 8 or 9 when the others definitely got bored by 7! It is odd to look back, certainly by 11 he would never have considered co-sleeping. If he has asthma it might actually be quite scary to be alone at night, could you share a room even if it is a different bed?

[Nettleskeins]

Ds2 was not speech delayed and has excellent speech. He also has mild ADHD (inattentive) Dyspraxia, dyslexia and I would say dysgraphia but that hasn't been diagnosed. He is now doing A levels and very independent in some ways but still lacks a lot of executive function, and quite dependent on an organisational level at the last moment (where are my socks, where is my travel card, is there a pen, sort of level) but otherwise his anxiety is very very low. I think the less he worries about everyday things the calmer he is, it is a kind of protective mechanism that he lives in the moment. But that has taken a few years to get to that stage!

[Clairaloulou]

Thanks for your replies everyone.

In my area you can't get a gp to refer you, it has to be through school or speech and language, which is a real pain in the arse. School are very supportive to an extent, with his academic support they've been very good, but they were oblivious to the dyslexia and dysgraphia and tics even, and they think that his behaviour around not wanting to come to school is purely down to him manipulating me. They won't see the majority of the concerning behaviour. Am just waiting for headmistress to come to me for a chat before I pick him up - am going to ask her to humour me and refer him for an assessment. We already have a referral to CAMHS in the pipeline, but apparently the asd stuff is separate 🙄

[Clairaloulou]

@Nettleskeins my son is like that too! No short term memory and needs me to do literally everything organisational for him.

[LightTripper]

I think that is very common that schools don't see this because kids use all their energy to comply and do what they need to do at school and then the wheels come off at home after all that effort.

It may be worth looking at the NAS pages on school avoidance and also showing them to the school. They might help explain that his school avoidance is due to clear anxiety, not just him wanting to mess around and have fun at home? www.autism.org.uk/about/in-education/exclusion/school-refusal-strategies.aspx
Those pages also refer to a teacher pack here: www.autism.org.uk/professionals/teachers.aspx
You could try calling them if these don't quite hit the brief?

Given you were right on the dyslexia and dysgraphia hopefully the HT will give you the benefit of the doubt on this and both give you a referral and start to put some strategies in place to take the pressure off DS at school.

[Clairaloulou]

@LightTripper thank you for your comment that's really helpful.

Good news - spoken to HT and she's agreed to speak to the educational psychologist when she's in next week about a referral. I hope she agrees - what do I do if she doesn't?

[LightTripper]

Maybe send some of these materials to the HT ahead of them seeing the EP? It might help encourage her to get a referral so she doesn't have to deal with ongoing pressure from you (not to be cynical but... sometimes it doesn't hurt to be a little bit "that parent")

Are you sure you can't get a GP referral if the school won't help? I thought they had to refer if you have concerns - may be worth talking to some of the charities to see if you can get advice on this.
www.autism.org.uk/about/diagnosis/children.aspx
www.ambitiousaboutautism.org.uk/understanding-autism/diagnosis/how-do-i-get-a-diagnosis-
You could also try the NAS autism helpline (www.autism.org.uk/services/helplines/main/contact.aspx) and they may have a local group near you who would know about how your local area does things.

[Clairaloulou]

@LightTripper I'm going to write down a list of "symptoms" that I've noticed and give it to the HT to give to the EdPsyc. Hopefully this will be better than just going off HTs word

[Clairaloulou]

Also, @LightTripper I've had it confirmed by gp, school and camhs that gp can't do it. It's ridiculous!

[wallymum]

If the educational psychologist doesn't make a referral then I would contact your local authority's head of SEND directly. They have a duty of care to your son. It does sound like anxiety related to possible asd. Once they take it seriously the school response will be overwhelmingly positive and change your son's whole attitude to school. Parents have huge power in navigating the correct support for their children's care in the education system and rightly so! It's just about who shouts loudest unfortunately. Good luck xx

[Clairaloulou]

@wallymum thank you for that. I really do think there is something underlying that is causing all the "problems", and not that they are stand-alone, if that makes sense.

Fingers crossed I get somewhere!

[Ellie56]

The meltdowns, delayed language development, rigid literal interpretation, problems adapting to change, poor social skills and heightened sensitivity are all recognised indicators of autism. Our son has all of these but was not diagnosed with ASD until he was nearly 8, although we had suspected autism from when he was 3 and had been raising concerns with different professionals since then.

The anxiety and meltdowns are because his needs are not being met properly.We had a lot of behavioural issues when DS was in junior school and I now realise this was because he did not have the right level of support.

In your shoes OP I would keep badgering the HT until she does agree to a referral to the EP. Your son clearly needs help.

Unfortunately, OP, as many on here will tell you, you will have to keep being "that parent", which means you have to keep making a nuisance of yourself until your son gets what he needs. It is hugely stressful, but if you don't fight for your son no one else will.

Good luck OP

[Clairaloulou]

Feeling very dissuaded. HT talked to Ed psych and she won't do a referral because school doesn't need any support with his behaviour. HT also said "what difference will it make if it is determined he is or he isn't?"

So I can't get a referral through the gp or school so it looks like I'm not going to get anywhere at all.

Feel even more like I'm just being a neurotic mother and everyone else thinks I'm BU

[Punxsutawney]

We also live in an area where for school age children a referral has to come from their school and gp referrals will not be accepted.

My son is 14 and was referred by his school last year. When I first approached them they were completely dismissive. They did agree to get some feedback from teachers, interestingly some did see there were issues. They then did consult with the educational physiologist who suggested that a referral may be a good idea. Although as far as I know she never actually met my son. He has no behaviour problems in school, it is more the social communication side that is an issue. To be honest I'm amazed that they did agree to do the referral. I'm not sure what we would have done if they had refused to do it as there would not have been any other option for us apart from a private diagnosis which is very expensive.

I can completely understand your frustration. We don't have a diagnosis yet and apart from doing the referral the school have been totally unsupportive. The senco has finally agreed to meet us after 8 months but I don't hold out much hope for any kind of support for him. I wish I could offer you some better advice because it is very difficult when you live in an area where only schools can refer.

Good luck and I hope you manage to get a referral at some point.

[Ellie56]

Sorry to hear that @Clairaloulou**. How frustrating!

In your shoes I would go back to the GP and explain that all the anxiety meltdowns etc are getting worse and ask if they can get the CAMHS appointment brought forward.

I would also keep a diary of all the meltdowns and any other unusual behaviour and if possible film some of it so you have evidence. It would also be useful if you can log what happened prior to the meltdowns so you can maybe identify "triggers".

Have you tried talking to the school SENCO?

[LightTripper]

That sounds incredibly frustrating.

Ellie's ideas sound good and maybe call the NAS to see if they have any advice on dealing with areas where you need a school's support?
Masking at school is so common that this must be a problem for lots of parents.

I think keeping great notes would be very valuable (e.g. an ABC approach: looking at what happened in the run up to meltdowns to see if you can identify any patterns between particular pressures/events at school and his meltdowns: if you can identify them then school should be able to help avoid them or do things in a way that puts less pressure on him).

Even if the school won't do anything towards a diagnosis and are saying "what difference would it make" maybe this actually strengthens your ability to argue for accommodations without a diagnosis. E.g. do they have any kind of lunchtime clubs that might be less stressful for him than being out in the playground (I'm thinking something like a puzzle club, coding club, something he can do quietly in a classroom with a few other like minded pupils) Do they have somewhere he can go if he gets stressed/overwhelmed? Can they make sure they signal changes to him (and you) as they would for a child who was on the spectrum? Whatever is or isn't the underlying reason it's clear that he is anxious and not having a lot of fun and this is having a big impact on home life. A good school should be willing to work with you to get him to a better place, with or without a diagnosis?

If they just write off and are very resistant to anything ASC related maybe in the short run frame it in terms of anxiety and everything he is having to deal with at home (which realistically you can do nothing about health issues, loss of family members,etc.) and so you want to see what they can do to relieve the pressure at school given that (diagnosable or not) he is clearly very anxious and struggles with friendships and with change.

[CinnamonToaster]

That sounds really difficult. He's 10 so year 5 or year 6? When does he go to secondary? How do you think he will cope with the transition? Did he go to infant school and move to juniors or has he been at the same school since he was 4?

[Clairaloulou]

@LightTripper that's really helpful thank you.

@CinnamonToaster he is in Year 5. He moved to his current school in year 2 due to a twat of a teacher (horrifyingly the senco!) that labelled him as low ability and lazy at the previous school. We have a middle school where we live so in September he starts there 😳 he's terrified. School have said he'll have extra settling in visits, and it's an outstanding school with a very strong sen team, so although DS is not going to cope very well, im actually hoping (and this sounds awful) that it does go belly up because we might get somewhere. Feel terrible saying that! I do actually think he'll do fairly well there though once he's found his feet.

[CinnamonToaster]

OK. From a practical point of view I would go straight to the SENCo at the new school and share your suspicions and the problem. Don't wait for the wheels to fall off.

When we were in your position pre-diagnosis - and actually all through the year long process - I felt like the diagnosis was a necessary first step before everything else. That really isn't the case. If you can, I would really recommend approaching it as if he already had a diagnosis in terms of raising his needs at school. Even if you got a referral tomorrow, if waiting times are like they are here, he wouldn't get diagnosed while he's at his current school. I'd be prioritising the practical over the diagnosis.

It was really helpful for us to have the diagnosis, mentally. However in practical terms, saying he is being assessed for autism, or that we have some suspicion he may be autistic, will often be just as useful.

I'm asking about transition because that is something my son finds very difficult. It's the main place where the difficulties we have at home become school's problem.