To ask for my son to be assessed for ASD?

[IChangedM]

I am certain my 11 year old is ASD. Due to a fair bit of luck I don't think that has really negatively effected him so far. I was expecting issues to manifest in high school but so far so good. Still though I am concerned about the future, I can readily identify the reasons why we have hit no stumbling blocks as yet and some of them will change, ie he has hit puberty ahead of most of his peers and that combined with him being tall and big built (not overweight) is a protective factor against bullying. DH's attitude is all "labeling is bad" and "not broke don't fix". He has accepted that DS is likely ASD.

I go back and forth on this. I genuinely don't know what to do.

I have this terrible habit of trying to pre-empt responses from other posters which makes my posts longer and longer and eventually I just give it up as a bad job and don't post anything. I would really like some advice on this and have tried to post numerous times in the past few weeks but ultimately deleted as I don't feel I explain myself well. So with that said I have tried to be brief and not overthink this post. I am happy to answer anything additional but please don't be too harsh with me if I have phrased anything poorly.

And what I meant to say lol
Ignore those who say if he has got to this is rubbish.

If he has a problem and you don't mind the label and see it as helpful go ahead
I have twins one (my easiest ironically) who was diagnosed years ago with ASD, his younger twin not diagnosed but now waiting on appointments at Camhs. He coped okay in primary but at 12 is suddenly off the scale autism wise as his needs are not met at all at secondary.
I am going through EHCPs with both children at the moment.
Age is no barrier to diagnosis.

With the things you have said I think it could be worth you talking to the schools senco or going to your gp. The waiting lists for assessments are extremely long though.

EineKleine

It's difficult. I am trying to be objective but context is everything. I inevitably filter all his behaviour through my experience of his older DS who is 16.

OP your DS sounds a lot like mine, he was diagnosed at 6. I'd suspected he was on the spectrum from about 10 months as he wasn't developing along the lines of other babies, but because I was training to become a psychologist at the time a lot of people said I was just seeing things that weren't there.

DS is 10 in yr5 now and he is definitely exceptionally high functioning. He is on target to excelling in most subjects, doesn't have meltdowns (he also has shutdowns), always eats the same things, has obsessions, sensory things, dislikes loud/high pitched sounds, hates crowds, gets very anxious etc.

What you said about football made me smile - DS tried football. He spent more time spinning and laying on the grass watching clouds. One time he was due to take his turn to shoot a goal and decided to fling himself into the goal instead!

But a lot of people say they wouldn't know he's on the spectrum until I say so. I think that can be quite damaging for HF people - they are often expected to be able to cope better than someone who is lower functioning. I spent DS' first year at junior school fighting with the head who was insistent that all DS needed was 'to learn to behave' and 'stick to the rules' and because he's smart he should be able to manage that. Thankfully the head spent some time 1:1 with DS and realised he didn't want to be in trouble all the time and he was trying his hardest. Now DS is coping really well and the head always makes sure to praise him for how well he is coping.

YANBU to ask for an assessment. I went to the GP and said there were some milestones he was behind on and some things he was exceptional at, social difficulties etc and we got a referral with no issue.

As others have said, labels aren't a bad thing, they allow us to access support that we otherwise wouldn't have access to. I say that as someone who was told not to label their physical disabilities for years.

As a mother with an 8 year-old DD who has aspergers, I would say a diagnosis in itself is only helpful in the way that it can help your DC, and as a parent any experience is objective, so I think some of my DD's behaviours are quite normal, but when I spend time with others it's quickly apparent they're not.

It seems that you think there's a problem which may benefit from intervention, in which case I'd say, yes, contact CAHMS (but beware, it's not straightforward).

Some children manifest very early and explosively, DD was permanently excluded from school at the age of six, but others can internalise that anxiety and hold it in for a long time. It is a spectrum not a tick box exercise.

Short answer: YANBU, you are being a caring parent.

Long answer: He sounds a bit like my 11 year old DS, who has an Asperger's / high functioning ASC diagnosis (the word disorder is out and condition is in). He was diagnosed aged 4. A GP referral is your best bet. DS had both paediatric and CAMHS assessments to help rule out conditions that might look like an ASC.

A diagnosis has helped a lot with understanding how best to help and support DS. I have learned skills to help manage sensory issues and behaviour and to help him learn social skills. DS is high functioning so has no chance of a EHCP. His school have been pretty useless. They don't see him as a behaviour management problem so he's sometimes left to do his own thing. He's now approaching secondary school and puberty and I think his diagnosis will help both him and me in managing these changes.

DS always refers to himself as being an aspie, not as having Asperger's. It's who he is not something he is suffering from, like asthma. He's proud of his difference and the skills and qualities he has that NT people lack. He tells people it's not a syndrome or a disorder but a super power. He's right, now I understand him better I can see how amazing he is.

Whatever you decide to do I hope things work out well for your DS.

RhodaBorrocks

Thanks for that, it made me smile (and tear up a bit).

Would you say the GP is a better route than the school then?

He tells people it's not a syndrome or a disorder but a super power.

I totally agree, when discussing it with DH he said "The problem is you are looking for problems" and I answered with "No, the problem is you see these things as a problem". That was actually the discussion where we got on the same page (kind of).

smallchanceofrain

I missed a chance to have him assessed at 4. The school pushed for it within weeks of him starting. I shut it down. Things settled and here we are.

Thanks for all your replies. I am reading every one and every one is useful and appreciated.

IChanged, I completely understand the not wanting to see a problem when they're small, it was apparent with DD from when she started school that something was amiss, but I dismissed it in the way, it's just teething problems, she's highly-strung, it's very difficult as a parent to accept there may be something about your child that is different, and profoundly different in a way that will affect them all their lives.

It's much easier to dismiss it at 'within the normal range', I did the same, DD had other ideas though!

As the parent of a middlish functioning son with ASD/ASC (whatever the preferred term is now!) my experience is that the label has been very helpful.
My DS2 was formally diagnosed at 8, before that is was 'delayed development/delayed speech bla bla)..he had quite a few issues, but the ASD diagnosis helped people adjust their views and expectations of him..for the better... they were more patient with his anxieties and repetitive talking etc.
He's 19 now..nearly 20. His label has enabled him to access support in the adult world... a traineeship with Mencap, support at college, support for looking for jobs, and due to the disability act, a guarantee of interview if he met the basic criteria. Thanks to that he actually has a job now with a major supermarket, just about to finish his first year there, where he has had extra support, and done brilliantly...and they love him!
He's not academically able..he is, for want of a better description..a 'Rainman' sterotype. But he LIKES having a name for who, and how he is.
His diagnosis has also enabled him to access benefits like PIP which give him extra money to fund support for his interests, special needs groups etc (we manage that as he has no idea with money)

I would defo go for assessment and take it from there!

ILikeyourHairyHands

It's crazy but I had forgot all about the issues in reception until I started answering the questions on here. I was really proud of myself at the time. He was a little nightmare for the teachers, they were at their wits end. Then just all of a sudden it changed, it really was sudden. Literally over the course of a couple of weeks he went from uncontrollable to the top of the class. Obviously I congratulated myself on stopping them from referring him.

IChanged I completely understand, DD is very high-functioning, every bugger loves her because she has a way of tapping into people, she mimics and copies so well, and has the best sense of humour, and she's very academically able, but then it was a case of, 'Why is this four year-old attacking people?', and it escalated from there, she can cope very well. Until she can't.

And the hardest thing to come to terms with sometimes is other people's perceptions.

So it's good that your DS has a mother that is in tune with him, that sees him for who he is.

He was learning the rules, its easy to figure out what authority figures and teachers want you to do because they tell you when you are wrong and what they want you to do, but peer to peer is hard because other children are learning social interaction too and you dont get the feedback you need to get it right.

Aspies are often strict rule followers, if they like the rule that is. My brother was clashing with teachers because he didnt see a reason why he should do things the way they told him to, because he understood things differently. Eg showing your working in maths - if he knew the answer without having to do the working why did it matter? But he refused to see a 15 film until his 15th birthday even though we had the dvd and my parents had said it was ok for him to watch. Its just a different way of looking at the world

Wow Muse my son is so similar to your brother. The last row he got into with a teacher was about history. The class was studying a particular ancient civilization, the teacher said they originated in one country. My son told her this was wrong, it was a different country and they migrated and the population grew. My son was right, she was wrong. He couldn't understand that for the purposes of the lesson it really didn't matter. He couldn't let it stand, he couldn't speak to her afterwards. She was wrong and to him that superseded all other rules.

On the other hand could I get him to go into school with black sports socks instead of the regulation navy for PE? Could I bollocks. This is despite having an older son at the school who assured him it was fine and him admitting that he has seen other kids in black socks with no issues and really they were barely different.

It can only be helpful for him to learn who he is and for others to understand and support him. I hope your DH gets over this fear of labels..i have never met a dad who doesnt get this..and changes his viewpoint

I would be concerned about bullying later and about him struggling to cope when older. You sound very much on the right page..hopefully your DH is just a bit
behind and will catch up.

OP good luck with this and I hope GP and school (SENCO) will be a first good port of call for you.

Just want to say, there are many many young people who have autistic characteristics (even quite strong ones) and yet are not usefully to be thought as being within the spectrum. For example, anxiety and obsessional qualities can appear autistic like, and yet with some therapy some of these children's thinking can become in time much more flexible. Worth exploring. But just wanted to point out that many different difficulties look on the outside like ASD but are not in fact that.

Thanks for responding.

At 11 he definitely sounds aware that he's a bit different. Teenage years are often difficult and the hardest time for a diagnosis to be accepted so may be worth talking to him now?

He sounds really academically able and like he could go far with the right support so getting it put in place whilst he's young would be great. He must be so frustrated and confused over the history class incident, that would drive me insane!

If he's anything like myself and a few others I know he will like the fact that his brain is different. For me it's like a talisman. I can use it to unlock support I need but as an adult I only really need to tell who I want or need to- it's my choice. Knowing that autism makes my memory better and some parts of my brain quicker gives me the confidence to ask people to make adjustments that I need (quiet room, advance warning of stuff).

EHCPs are based on need, so you don't need a diagnosis to get one, and having a diagnosis doesn't mean you will get one (you will need a shedload of evidence of need to get assessed).

I have a 13 year old, I suspected that she had ASD when my son - age 7 was diagnosed. DD is currently in the assessment process ( on a 21 month waiting list to have ADOS). I do wonder with her if I'm right and if I'm doing the right thing. It's really hard to know.

losing/forgetting stuff

This is another trait! Very common one

To be honest, if your son has got to 11 years old without any significant problems then I'm not sure why you think he might be on the Autism Spectrum.
Seriously?! How do you think so many of us got to adulthood without being diagnosed? You learn to mask, you try so hard to blend in, and at some point it starts to come apart because all that pretence becomes too much. Just because there aren't massive outward signs doesn't mean that he's not imploding on the inside.

I would make a list of your concerns and take it to your GP, you dont need to take your son initially as it might be hard to talk about his difficulties when he is there!

It does sound as though he may have some red flags for Asd otr it could be something else. If you need some support come over to the special needs children board or special needs chat.

Good luck

BiL is a highly successful IT professional. Married, 2 kids. He was diagnosed with HFA age 42. His diagnosis made him very happy because it explained why he found some things so difficult (crowds, sudden changes of plan, dealing w other people's emotions). If a person has ASD then they will find many aspects of life challenging, even if they appear to be coping fine. BiL certainly feels he's found his tribe now - before he just felt like a misfit.