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.

So what are you asking?

Label V no label?

What do you envisage him needing help with? Social issues? Meltdowns? School work?

What's the real isssue that you foresee?

ASD is only diagnosable if it is having an impact on day to day life. If he isn't having any issues of this sort it is unlikely that assessments would lead to diagnosis at this stage.

What things is he doing that make you suspect ASD? That would probably be a good starting point to work out whether assessments and diagnosis would be worth pursuing.

What help do you think a diagnosis would bring? One of the diagnostic criteria is that the behaviours do negatively affect them.
Wrt 'labelling' it really is about the help a diagnosis brings.
And without flaming the preferred way of phrasing it is 'has ASD' rather than 'is ASD' because ASD is a disorder so you wouldn't say someone is Asthma but rather they have Asthma :)

School work is a mixed bag, he tests exceptionally well but consistently underachieves in class. He can be inappropriate and come across as arrogant and to be honest quite unlikable.

It's difficult to foresee any real issue academically as he is so bright that even if he underachieved it still wouldn't be bad (is that too blase?). He doesn't do meltdowns, he goes in on himself. He can be over emotional when challenged but generally he is more likely to sit and stare than have an outburst (the kid can look at a wall for hours). Is that an issue? Does it make him more likely to self harm? He pulled out one of his eyebrows and picks at himself (till he bleeds) when anxious. I can see bullying or even being attacked being an issue, but what help is there for this? Is this something I can do myself? My friend mentioned social stories but it hasn't helped as the information I have found on them is aimed a kids who need a lot more support than my DS.

Even writing this I veer from feeling like I am overreacting to under-reacting.

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. Have teachers or others flagged up any issues or problems with you over the years?

You've not given any information here about why you think ASD is a possibility. To get an assessment you'd need to be able to articulate and give examples of the ways in which you think he might meet the criteria.

YANBU to want to have your DS assessed / diagnosed. There are plenty of people who go through life into adulthood, relationships, work etc who are in the spectrum, and don't have a diagnosis, and maybe get one as an adult in their 30s, 40s etc. That doesn't mean a diagnosis isn't useful - I can't speak for other people, but I know in my own family a diagnosis for the adult has been beneficial as it has helped them to understand themselves, as well as helped those around them, even though they are not using that at current for any specific support or adjustments and so on.

I don't believe in the label issue, that's just me. In my family we have a variety of disabilities / illnesses / conditions both mental and physical. In our world, no one ever seems to worry about labelling for anything until it comes to ASC

A diagnosis can help with providing extra support as and when needed, and with generally understanding one another / oneself. It could mean a lot of intervention, if needed, or not much at all, it could just be a little more understanding from teachers for instance if that became necessary. It could remain something private for your family, for your DS to decide what he wants to do.

That's not very coherent I don't think, but basically a diagnosis can be helpful for a variety of things and doesn't just have to be about accessing support, and I personally don't worry about the labels. The SN boards however have loads of really helpful and knowledgeable MNers who could probably give you some great info.

He certainly sounds anxious. But possibly that's it?
How are his friendships? Does he have hobbies or interests that he shares? Eats well?

Sorry, you posted while I was typing.

Perhaps, instead of focussing on ASD, it would be worth having a chat with the school or education psychologist/CAHMS about your concerns, and be open to an assessment which isn't focussed on a particular outcome, other than ensuring your son's well-being.

It sounds much more of a confidence/anxiety issue then ASD, but I'm no expert.

I was quite slow to type Seen your further posts - look for shutdowns, my DS does this sometimes instead of meltdown.

CAMHS (Child & Adolescent Mental Health Service I think? Your local authority should have one of these) can support for things like as you mention, i.e. support with anything relating, like sensory issues, anxiety, etc. If he already has anxiety issues, picking at himself etc you may be able to get referred to CAMHS on that basis regardless of a diagnosis of autism - for instance they might work with you / him on how he manages his feelings, so that he doesn't pick at himself, and strategies to avoid shutdowns.

What things is he doing that make you suspect ASD?

Christ there is so much. He hates any kind of upset to routine, the biggest problem I have with him is if I oversleep and he is late. He has a number of sensory things. He loves water (he is 11 and still obsessed with puddles) and hates lots of noise or certain pitches. The social stuff is the big one he has no filter, no way of interacting differently. He speaks to his baby nephew (15 months) the same way he speaks to his grandparents. He never seeks out social interaction and will often shut it down. He can't function in group, he either talks over everyone with no awareness of what anybody else is saying or he sits and stares. His sense of danger is frighteningly nonexistent.

What help do you think a diagnosis would bring?

Help if it does become a bigger issue? A starting point?

And without flaming the preferred way of phrasing it is 'has ASD' rather than 'is ASD' because ASD is a disorder so you wouldn't say someone is Asthma but rather they have Asthma

Honestly I was told recently that many autistic people prefer "autistic people" rather than "people with autism etc" (which I have been encouraged to say, I work in social care). I personally prefer the latter.

Even writing this I veer from feeling like I am overreacting to under-reacting.

I completely identify with this. We've spent years saying "it's only a problem if it's a problem" - as Exploded and Curious said, it's only diagnosable if it causes significant difficulties. He hit junior school and it's become a problem so we are going through the process of getting him assessed, which takes ages. But I doubt he would have got a diagnosis younger.

Does he have difficulties sustaining friendships or engaging with others? Does he have very rigid behaviours, thought processes or approaches? Does he function well in a group task at school?

Crosspost, clearly!

Autistic people is fine too. It's a descriptive word for us. But I am not ASD.
The description of his behaviours sounds like it would be worth investigating. It will involve CAMHS though so it will be a long, long process.

Your big paragraph at 00:08:43 doesn't say "not broke don't fix", or that it hasn't affected him negatively.

Might be worth talking to school senco perhaps? It doesn't comit you to anything.

Op, have you looked at the triad of impairments? It's the criteria by which ASD is diagnosed. certsinly sounds like there are traits, it may help you to sort them out. Then go to the GP to get a referral - don't bother about involving school. Go is your best bet.

Have an assessment. My parents wondered all my life and never got one because I was performing well academically. It's not the only way to measure someone, I am a social car carsh. Uni was a struggle then I got "let go" from 6 jobs in 2 years.

After diagnosis at 24 I FINALLY understand myself, no longer feel inadequate as I try and force myself to act NT. So much pressure is removed, I allow myself to just be and no longer hold myself up to NT standards. I forgave myself for what I saw as failings in my childhood and no longer think I'm just a rubbish person for struggling with things other people find easy!

A huge sense of peace. I feel like I fit in now because I feel like I'm meant to be different and that's okay. Me as autistic me is okay whereas me, trying to be NT, didn't work.

People used to say you have friends (well I look like I do), a degree and a job, you can't be autistic. But I was significantly underachieving. With minor adjustments and an understanding employer I hold down a stable job I couldn't have dreamed of before.

YANBU Would you call it labelling to get celiac or diabetes or epilepsy diagnosed? No? Basically getting a diagnosis is about getting the help he needs to cope with problems. While you say he is not bullied, that is not the only reason to get diagnosed.

Think about the reasons you think he is asd and think about what can be done to help him and whether he would need a diagnosis to be able to get the help eg tinted glasses to help with sight sensitivity would probably go unremarked but if it is a sound sensitivity then you would need a diagnosis to get the school to accept headphones. If he has interpersonal issues you can coach him on some social etiquette, but if he has meltdown he needs a quiet/safe time out space and permission to go that would require a diagnosis and cooperation from school.

Im not diagnosed because i was able to mask and spend a lot of time alone, but i begged for years for my parents to get my younger brother diagnosed becuse he was clashing with teachers at school, he finally got one before college and the teachers were more aware how to handle him.

So you need to ask - what is his sensory sensitivity, level of interpersonal skills, and level of intelligence/focus and will you need to get the school to cooperate on strategies for handling them?

If there is a paticular reason for you to then yes push and push hard. If not then i would still ask now as it would make things easier in the future if he ever does develop a problem but i wouldnt prioritise a diagnosis so much if it is things you can handle with just your own awareness (but be mindful that you dont try to do it alone whichever way you chose)

He certainly sounds anxious. But possibly that's it?

Maybe, he always worries about quite unusual things. Once he became obsessed with defunct computer sounds (I dunno what to even call them, like the noise when Windows starts up or the little bleep when you plug a USB in). He got really worried about one specific noise because he couldn't stop thinking about it, it was an error noise from an old mac (we don't have a mac he was listening to these on youtube). That was about two years ago and it's the only time he has come to me about something more than once. It lasted about a week.

I don't suppose it matters though does it? The problem isn't what he is anxious about but his coping strategies.

How are his friendships?

He doesn't have any. We sent him to a high school that was not his feeder school based purely on the fact that the only person that came close to being a "friend" in primary was going there. Obviously I asked him was he in any classes with him. He didn't even know. That said since he went to high school I have seen him walking with other kids. On parents evening he talked to some other kids but wasn't able to tell me most of their names. I think it helps that he is new coming from a non-feeder primary.

Does he have hobbies or interests that he shares?

He is obsessed with history and computers. I got him into history when he was younger and it's nice because we do discuss it. His knowledge far outstrips mine now. I've always encouraged the kids to have clubs etc and we tried loads. Football lasted the longest but he showed no interest in it yet insisted that he keep going. Dad and older DS are both footballers so I think that was why. Quite honestly it was embarrassing as he would never listen and just be there spinning or looking at something in the grass. What always got me about this was his complete lack of embarrassment. He would let a goal go in that he easily could have stopped if he been looking at the pitch but wouldn't care at all.

Eats well?
No issues other than he wants the same thing all the time.

BTW I have a lot of question marks in my answers because I am unsure.

I have professional experience with students with autism and I would recommend a diagnosis because diagnosis makes an Education, Health & Social Plan possible and an EHCP gives heft to ensuring that schools and colleges provide support. Even if he doesn't need human support, he may, as he moves through education, need differentiation in class, social or mentoring support, exam access arrangements.

If he goes to university, a diagnosis opens up the possibility of Disabled Students' Allowance which may fund software, Study Skills support and mentoring.

Also, many students I work with understand that they are in some way different from their peers but without understanding why, particularly as they move into adolescence and struggle to cope with relationships. This can have a very damaging effect on their self esteem and mental health. Knowing why they are struggling and being able to access support groups and organisations and online forums is really important.

Sounds very familiar to me & dd. I think with all the extra info you should pursue it then.
Hedda the EHCP seems to be bloody impossible for High Functioning ASD where they're coping academically even after diagnosis :(

ExplodedCloud It seems totally random to me. We have some students who don't seem to need much support who have very thorough EHCPs and then much more needy students who don't have them! I'm assuming it's about how articulate and assertive the parents are but who knows?

Cross posted but yes i would try to get a referal or diagnosis, (i was a teen when my bro was dx so dont know much about it)

Agree with pp that knowing you are not NT in itself is a help and for me a self diagnosis was enough - to know that there are other people who dont know how to be social is reassuring. The rules seemed so instinctive to some but i couldnt work them out and nobody would tell me them and it took a lot of obsevation and anxiety on my part to get even a few nailed down on my part and i still dont have any flexibility with them. At least in knew there were rules though, my brother was completely oblivious and not even aware he was being rude.

It does sound as if your son needs some rules explaining and some help in implementation.

ExplodedCloud

Ahhh I see. Apologies and noted for future. :)

Musereader

Thanks, those questions are really helpful. I can't think properly right now but I am going to come back to them later to try and get my thoughts in order. I am surprised at how much articulating all this is effecting me.

Like your brother he started clashing with teachers in the last year of primary school and his behaviour was starting to become an issue (for the first time since reception, which was a brief but intense nightmare) when he moved up. I was expecting it to get worse but it hasn't. His first couple of weeks he was put on multiple detentions for being late for classes and losing/forgetting stuff. I was just gearing up to make the appointment when it all resolved. Now I am writing it I have realised that this is exactly the same as when he started primary school (only primary was much worse).

user1471548941

Thanks, your experience is the scenario I am probably most worried about (that or him being run over or beaten up). He trundles along adlibbing coping strategies (he is excellent at this, I could kick myself for not realising his obsession with hoods) and then having a crap time as an adult. I am really please things have worked out for you now.

Ignore those who say if he has got to this this rubbish.

If he has a problem and you don't king the label and see it as helpful go ahead
I have twins one (my easiest ironically) who was diagnosed years ago, his younger twin not diagnosed but now waiting on appointments coped okay on 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 at the moment.
because both did okay at primary.