ASD- is it possible to be autistic but appear ok at school?

[Worriedaboutmyds]

While I know that no-one here can say if my ds has autism or not I'm hoping I can ask a few questions to gain some knowledge before I decide how to proceed.

My ds is 10 years old. Since he was a toddler I've had concerns about him but I raised these concerns with our health visitor at the time who scared me by talking about how negative it can be for a child to grow up with a label. Me and my dh took the view that we would just try and manage our ds 'querks' and we've tried so many different techniques over the years with variable success. Our view was that as long as he seems ok we would work through the difficulties and he wouldn't need an assessment or diagnosis if he could cope ok without it (if he even has anything to diagnose) . While certain behaviours have improved because my ds has strategies to deal with them there are so many issues where he struggles. Over the years I've had periods where I've doubted whether I'm doing the right thing and by managing him like this. I feel like I go between being convinced he has autism and then thinking I'm ridiculous for thinking that way.

The last few weeks things have been awful. He's a wonderful, lovely child and it's breaking my heart not knowing how to help him or even if there is some underlying issue (sorry I'm not sure what word is appropriate to use there).

After an awful few weeks I've decided to take a list of my concern to the gp and have a chat with them about what is best for ds from here. I'm so sure he has autism from everything I've read but I'm worried the gp will tell me he can't be on the spectrum because he copes well according to his teachers. Is it possible for a child to have autism and cope ok in the classroom? Initially he really struggled with school and we moved him to a different school 18 months after he started school because we thought that might help. While he appears fine during the school day most of the time he is terrible before and after school. We can go periods of time where he seems to cope ok and then for reasons we can't work out his struggles come out before and after school. We are trying our best to manage this and help him but I feel like I'm failing my lovely boy!
I have two other children and lots of niece's and nephew's so I can see that compared to them my son just seems to have 'differences' and life just seems to be harder for him in certain ways.

This week his issues have affected him during the school day and he's spent some time with the senco and deputy head who tried to calm him down and help him. From now on he is able to go to the senco office if he needs to during school time. In the past I've asked the teachers if they have any concerns and they always tell me 'he's a bright boys and is fine in school'. Like most schools they are under resourced and don't seem aware of children who have diagnosed conditions so I know they don't really notice if children have issues even if they are obvious.

I'm so so worried about what will happen when he starts secondary school. When the routine changes and he's expected to move from class to class with a different teacher each lesson is going to really impact him. He has children he spends time with but no actual friends because he doesn't seem to understand how to be part of a friendship group so the transition to high school is going to be so hard for him I think.
When I seriously take time to look at our behaviour, we adjust so much of our daily lives around ds and spend so much of our time 'managing' things so that he's ok. I'm so worried we are getting this all wrong and life is going to be harded for him when he's less dependant on us and life isn't managed for him if that makes sense.

Can anyone give me any advice about where to go from here? Is it the gp I see or do I self refer to some service that I don't know about?

If your child was 10 would you seek out a diagnosis or just hope you can help him enough to cope with life?

I'm sorry this is so all over the place. I hope my ramblings make enough sense. I'm not new to having to advocate for my child because I have an teenager who has a life limiting medical condition but I feel so out of my depth with this and wish I could just make life easier for my ds.

My teenager is on the autism diagnosis pathway at the moment and it is hard age to be going through assessment. In hindsight I wish we had pursued a diagnosis earlier before they hit their teen years. Our son seemed to cope at primary although we knew that there were issues but you are right secondary brings with it many more challenges.

Maybe approach the school with your concerns and see if they have also picked up on anything. It wasn't until we actually approached the school that teachers agreed that there were issues. The school had chosen not to share their concerns with us until we asked them if there were any problems. I think many children are not picked up on until the teen years hit and even then some still mask their difficulties in school. In our area it is schools that do the referral but that does differ around the country.

Do you think your son as any anxiety about his older sibling and their illness? That must be a huge strain on the whole family.

Punxsutawney thank you for your reply. I will approach the school again next week. The school has had serious problems for years which seem to be improving now but they aren't very useful at all. Even with my dd and her condition they were useless. But I will try, especially now the senco has seen issues last week with him.

Yes he definitely has anxiety around my dd medical condition. He has terrible anxiety in general so it's difficult to pin point what is causing him to have panic attacks some days (I don't know if they are panic attacks but I have no idea how else to explain it) . Other days it's more clear what the trigger is. For example he will be anxious if she has an unexpected hospital appointment (which is very rare because she is incredibly well at the moment thankfully) but he is also anxious if we change his morning routine, or if he has a different assembly or trip at school or if his clothes are in a different place in the morning. Or he'll be anxious if he's having a tough week and I leave the 'wrong' clothes out for him to wear because he doesn't like they way they feel. He is anxious if we do something he doesn't know is happening. We can't do surprises because he just cannot cope with it. So his anxiety seems to be linked to how over loaded he is feeling at the particular time and can be related to things most people would never expect or can be from understandable things. I've just been researching private counseling for children with anxiety in my area and plan to call them tomorrow to discuss that avenue and see if that can help him even if it's a small help for one issue it might make a difference for him.

I hope your son is doing ok with it all. The assessment process sounds hugely challenging. Did you always feel there were iss

Sorry I posted before finishing..

Did you always feel there were issues and suspect autism? What made you wait until now to seek a diagnosis? I hope that it is ok for me to ask those questions

I don't mind answering your questions at all! Yes we always knew. His reception teacher told us she thought he was 'different' and that something wasn't right. Neither she or the senco at the time ever offered any kind of advice or support though. As he got older I could see he struggled socially, had sensory issues and was very rigid in his thinking. But he seemed to cope so we like you adjusted our behaviour at home to make life easier for him.

In year 6 things started to get more difficult. I worked at his school and could see for myself that things were not ok. He was struggling socially but I was a little naive and thought the change to secondary might help. His transition was not good at all but we kept on going without any support until the middle year 9. I approached the senco who initially said there were no issues but she would talk to his teachers. Some of them reported back that there were concerns so the senco agreed to do the referral. When we had a meeting with her a couple of weeks ago she said that you can tell he has communication problems just by speaking to him for a couple of minutes.

I do feel some guilt for leaving it until now to pursue a diagnosis, I thought we were doing the right thing when he was younger as he seemed to cope. He does resent me for putting him through the assessments but I would say he is struggling more now than ever before. I can relate to the descriptions of your son, my son is very similar.

Sorry, I'm probably not a lot of help but I can see that you have always had concerns like we did. I definitely think it is worth pursuing with the school, assessments can take a long time and any support that could make his transition to secondary and his teenage years a better experience for him can only be a positive. Good luck!

I just wanted to say please don't feel that you are failing him either. There seems to be lots of children that go through primary school without support or a diagnosis.

Our local health authority run a workshop for parents whose children are on the asd diagnosis pathway. I was amazed when I went that every parent there apart from one had children over 10, most had teenagers! I thought I was the only one going through the process with an older child but there seems to be lots of parents in the same position.

ASD children are well know for 'masking'. They let their anxieties and frustrations buildup inside them and then explode when they get home.

The OT said to me its like a bottle of fizzy drink - the child gets shaken up during their day at school (eg sensory pressures) and then they explode when the lid is taken off at home, ie they are in a safe place where they can release their issues.

Please ask the GP for a referral to the Paed. If they refuse, put your request in writing x

Yes, they can absolutely present like this! My dd was diagnosed last year, aged 11.

She’d always been difficult to manage at home and out and about but no problem at school. She’s very bright so flew under the radar. Things started to become worse in y4 and she started to fall apart in school in y5 as the demands increased and friendships became more complicated. I went to the gp and she was referred to community peads. The gp listened to my concerns (I went with a comprehensive list, going right back to her toddler years) and he used this to accompany her referral.

Things became even worse for her in y6 so her referral was passed to the clinical psychology team at the hospital where she was fast tracked and seen quickly. As I said, she got her diagnosis last summer.

It’s helped us so much to have a diagnosis as it’s helped us to understand her behaviour. I’m so glad we did it rather than muddle along (although it got the the point where we couldn’t manage on our own).

Simply googling good behaviour in school bad behaviour at home throws up a shedload of links, here are just a few, I think you may recognise the pattern.

www.autism.org.uk/about/behaviour/school-home.aspx

faithmummy.wordpress.com/2016/09/08/three-things-that-happen-when-your-autistic-child-is-different-at-home-and-at-school/

blogs.shu.ac.uk/autism/2014/11/18/good-behaviour-at-school-not-so-good-at-home/?doing_wp_cron=1550791935.3838129043579101562500

themighty.com/2015/10/delayed-effect-child-with-autism-melts-down-at-home-not-at-school/

Hi OP, I am new to this board as it's recently been suggested my 4 yo son be screened for ASD. So I'm afraid I don't have any helpful advice to offer as I'm new to this. But I just wanted to say how much I understand your decision to try to make adjustments for your child yourselves, and I'm so sorry that health visitor reacted so unhelpfully to you raising your concerns all those years ago. It sounds like you've done so much for your son, so lovingly, and now you're at the point of seeking help. Don't be hard on yourself.

My DS has just been diagnosed aged 7 and I have to say that just having it formally confirmed has really helped - both for me to know that it's not just my bad parenting (even though we've been almost certain he is on the spectrum for years, I have found it easier to stop doubting myself now it is in writing), and also when talking to teachers at school.
Absolutely possible to be (or at least appear to be) fine at school but struggle a lot before and after school. From what you have said it sounds very similar to my DS. I would go to the GP is school/SENCo are not motivated to refer him. Good luck!

In answer to your question yes, yes, yes. Especially with those who are higher functioning.

I am shocked and angry on your behalf at that stupid HV who told you such crap when you expressed concerns about your son when he was a little boy. But well done on helping him so far. If you had not put the strategies in place that you have done over the years, the wheels would have come off long before now.

We had concerns about our son from the age of 3. He was not diagnosed with autism until he was nearly 8.
Before that we were told there was nothing wrong with him , he was just naughty/ awkward/ lazy etc. Also as he had been diagnosed with language delay and disorder in his early years, everyone assumed (wrongly) that all the quirks were part and parcel of that.

We went through a bad phase where he would conform at school and then all hell would break loose at home. I now realise this was because he wasn't getting enough support at school and everything was too stressful for him. Consequently he held everything in during the day and then there would be a meltdown as soon as we got home. (Or on the way home if we decided to go home a different way.)

While nobody can make a diagnosis, a lot of what you say about your son screams autism at me as he is exhibiting similar behaviour to our son. He couldn't cope with changes in routine and surprises, had no real friends, and had sensory issues round clothes and even the labels inside them.

Many children on the spectrum have huge anxiety issues that are not anxiety issues per se, but part of their autism. It is well documented that those on the autistic spectrum are at higher risk of mental ill health issues than the general population. I know a girl who was not diagnosed with ASD until she was 15 and then only after having a complete nervous breakdown.

I would absolutely pursue a diagnosis. It sounds as though your poor boy is already struggling and needs support. This really needs to be put in place now, before the transition to secondary school, as that will need very careful handling.

Good luck

Totally agree with everyone else. Our son is 11 diagnosed age 6. If we didn't have that diagnosis I'm really not sure what help he would have got because if you read literature on girls with ASD that is what our son presents like. He has no behavioural issues and no learning needs other than if he hasn't got the right emotional support, he produces nothing at all at school, even though very capable and in the past his mood ebbed so low he lost a lot of weight. Not nice to see in anyone especially a 5/6/7 year old. He then had a year out of school, had never particularly made friends and not did he care.

Be strong and be sure of what you know because one thing I've learnt over the years is you have to be their champion and often that requires you to dig so deep you think you might meet yourself the other side.

Even now my son is full of anxiety but he's "fine"

Good luck OP. Trust yourself and don't feel bad. We listened to school for years and ignored our instincts, even after diagnosis! But I can't sit and mope about that, it's taught me a very important lesson and a mistake I won't make again.

For autistic kid to put in a mainstream school is like taking us from the comfort of our sofas and throw in the middle of a jungle. school years become struggle for survival, not fun.

My DS is 9. We've had him referred recently for diagnosis, however I've been warned that assessment appointments could be up to a year because my son doesn't have 'behaviour' problems.

We've always had concerns about him, but as he got older, the traits became more and more apparent. He's an only child, so can only point at not having another child to compare. Academically, he's at expected level, very bright and does his work. He's obsessed with dinosaurs, nature, animals, passionate about the environment and the effects on nature. It wasn't until we started filling in DLA forms on the advice of friends with DC with ASD and professionals (I work with SEN children) that we realised how much 'help' we actually provide for a 9 year old. Once we started acknowledging that HF ASD was probably the cause and accepted help from his physiotherapist in getting him on the waiting lists, that we started to see a difference in him and in us, how we deal with him and finding ways to make life easier for him. School have been amazing and have things in place for him already, which has seen improvements within 4 days (his teachers words, not mine)

In answer to your question though, if you have the chance to have him assessed and aim for a diagnosis, I'd say do it. If you'd asked me last year, I'd say no way. But in my opinion, things can only get better, as he'll be able to get what help he needs to make his life easier :)

Good luck

We only got DD's diagnosis last week, but I'd totally echo others' posts, esp @jimpix's post. She's 10 and her quirks are becoming more apparent now she's in Y5. When we started this journey, her y3 teacher poo pood my concerns because she was so well behaved at school. But everyone else who came across her seemed to get it and last week she was diagnosed with what used to be called Aspergers, now ASD.