Are there drawbacks in invesigating ASD in a quirky teen with no serious problems?

[MGMidget]

My teen DS (13) has finally been invited to what is supposed to be the final stage of an ASD assessment. We've been on this path since he was 7 or 8 when we first started investigating some issues. He was diagnosed with ADHD quite early in this process but the paeditrition referred him for an ASD assessment as well. However, we kept getting 'push back' on this. He would subsequently get re-referred by another professional dealing with him, more 'push-back' more delays, discharges to 'wait and see' etc have finally got us to this stage. My concern now is that I have a 13 year old going through the normal teenage development of 'finding himself' and I am worried that going through an autism assessment and being diagnosed (if that happens) with autism might have a negative effect on him.

I am therefore looking for feedback from anyone who has had a similar dilemma. My DS manages fine at school but does need a certain amount of support (mostly from me) to keep him organised. He seems happy enough in his own world but is perceived as a bit quirky. If he is ASD then he is 'high functioning'.

I am wondering if there are drawbacks to diagnosis in this circumstance? And, also what will happen when he is older? Will he be excluded from certain jobs/careers for example and does he have to declare it in job applications? I know in many jobs they ask for a medical or to contact GP for medical info for example so I do wonder about the implications for him and whether it might be better not to pursue it?

I am also worried that he might see himself more negatively if diagnosed rather than being in blissful ignorance?

Op You sound so confused and worried.

FWIW my DS is 12 and was diagnosed aged about 4, so my situation is different. My own view is that yes keep going. An ASD diagnosis does not change who your DS is, but will help to enable you to access informaiton and further school support if this is needed, or other kinds of support that might be needed periodically throughout his life.

Are you worried about him having a 'label'? This is a really common worry and one we were worried anyway but our ed psych explained to us that people are going to label DS anyway (he is not really high functioning though) and having a formal diagnosis or not is not going to change that. But having the diagnosis might in fact help.

Through having the diagnosis we are able to access support at school, and outside of school. Just even the most simple of things such as we can access specialist dental care for him as he has sensory issues and cannot handle a regular dentist. He has a specialist dentist he can only access because of his formal diagnosis - someone who is specially trained to deal with children and adults with autism.

In terms of having to declare it for jobs etc- well, I have no idea to be honest.

But my personal view is that having the diagnosis is really helpful because it opens the right doors when you need it.

Good luck.

Oh and in terms of viewing himself more negatively..... well, he probably already has an inkling he is 'different' to others or thinks differently to others. It may come as a relief to know there is an actual reason for it. We just point out all the famous achievers who have ASD to our DS. He is honestly not that interested in it right now, but when he struggles to relate to children I explain that he has a brain that deals with things in a slightly different way. It's not a negative, it just is. And there are loads of fabulous resources out there that focus on all the great things about it.

It might help your DS. If he is 'masking' by acting like other kids etc around him it can be exhausting. It might well be a relief to know what is going on inside him.

Thanks. I told him yesterday he was going for an appointment to check for autism and presented it as something that was originally recommended before he was diagnosed with adhd in order to be sure they has the correct diagnosis and treatment etc. He seemed fine with it, so much so he responded by simply saying OK and asking me a question about something completely different! So I guess the first hurdle I was worried about has been crossed.

I am worried about the label if it is damaging to him. At the same time it may be helpful as the social demands increase on him in the coming years. I felt one of his teachers was a bit insensitive on a parent evening zoom call recently when he commented that it was ‘wierd’ that my DS had thrived in lockdown as most people needed the interaction with others to do their best work!

That was a stupid and misjudged comment from the teacher! 'Most people' how long have they been a teacher I wonder! Plenty of people work best on their own (me included).

Glad he seemed okay with the assessment. That's the first step done!

My Ds was diagnosed with autism age 15. For us it was difficult as Ds was in complete denial. He had also been experiencing significant difficulties, so was already struggling. We had suspected ASD since he had been about 8 but he had 'coped' at primary, secondary was a different kettle of fish though.

Eighteen months later and he is slowly beginning to accept it. I've had to push massively to get him the support he needs but we are getting there. He's also moved to a far more supportive school, which has helped.

I think in the long run a diagnosis is normally helpful. I'm glad that we pushed his old to school to refer Ds. And although it's not been easy, his diagnosis has helped us secure support that I don't think we would have been able to access without it. And Ds is finally starting to understand some things about himself. We definitely don't see it as a negative label.

I am worried about the label if it is damaging to him

It exasperates me to hear a medical diagnosis of neurodiversity being called a 'label'.

It's really not, and it doesn't help any neurodiverse kids to use that terminology either, it minimises and trivialises their conditions.

Labels are stuck on suitcases and jars of jam.

Medical diagnoses, in a similar vein to the ADHD diagnosis he already has, which as you know can take years to finally obtain whilst having run the gauntlet of CAMHS and being passed from pillar to post sometimes without any support from school, can open doors to relevant help at school and reasonable adjustments in FE and later in the workplace.

Dd was diagnosed last March after a three year wait.
No they don’t have to declare it ever. She too was worried that she would be labelled.
My family were furious that I was attempting to put a label on her.
I think of it simply as self awareness. If you had a gluten intolerance you would want to know. Even though she was initially distressed by the dx she’s ok now and it had helped to understand what makes her tick and why she struggles with certain things.
I see it as a very positive thing to have done.

@BigButtons

Dd was diagnosed last March after a three year wait. No they don’t have to declare it ever. She too was worried that she would be labelled. My family were furious that I was attempting to put a label on her. I think of it simply as self awareness. If you had a gluten intolerance you would want to know. Even though she was initially distressed by the dx she’s ok now and it had helped to understand what makes her tick and why she struggles with certain things. I see it as a very positive thing to have done.

This is what I was trying to say, but expressed much more coherently. :)

Thanks for the comments everyone. We did the assessment and wait for the final result from the lead clinician (who wasn't there).

I too see it as potentially useful in gaining an understanding of DS and accessing support in the future if he needs it. However, I worry that his is now subjected to other people's perceptions about autism that may influence how he would feel about such a diagnosis. His school runs neurodiversity awareness sessions but he told me about one that was done on autism and it consisted of a classmate telling the others about her friend who was autistic and what they were like. So my DS thinks all autistic people are like that and doesn't see himself like that.

I am glad that we have finally gone through an assessment though and will have an answer! As far as it being a 'label' is concerned, I think there is a bit of a risk of narrow-mindedness/ignorance amongst some people he will come into contact with but if he can chose who to disclose a diagnosis to then that reduces the risk of a problem. I wouldn't want to have saddled him with a problem by getting him assessed!

@MGMidget people are very ignorant about autism. I see it as completely ’normal’ just a way the brain is wired.
Sadly many only think of it as a ‘condition’ whereby the sufferer is mute or incoherent, flapping, shouting and unable to function on their own. No two autistic people are alike just as no two neurotypical people are alike.
If he gets a dx he never needs to mention or refer to it again in his life if he so chooses.

IME, having a diagnosis is helpful. Later in life it can open doors, fast-tracking access to counselling, for example, if he runs into social difficulties. Maybe extra time in exams if he has processing issues that are often co-morbid with ASD.

Best of all for my ASD son, the school sent memos to his teachers explaining that they needed to use literal language with him. He is very articulate and so none of us spotted how literal he was. E.g. If teachers asked him 'Can you see what's on the board?' in a pointed way at the end of a class he didn't realise they meant: Stop staring into space and write it down, it's your homework. He'd then get confused and upset that they were angry because he hadn't done the homework when he claimed there wasn't any.