Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

It sounds like it's been a difficult path for you gowestlife, and I'm sorry you has to endure that.

I'm not keen on managing symptoms with medication, especially for children. So, I'm not sure in what other ways a label would help. I was planning to help him identify where he finds things a struggle and support him to find ways to manage those struggles. I'm not sure how that would be different if his struggles had a label and what advantage there would be to the label.

Daftasabroom - thanks for sharing that. How would a label have helped you? Do you think you would have taken meds? What problems did you experience and is there a way, other than getting a label, that your parents could have supported you so you could have avoided pain and addiction?

"The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), conceptualizes autism as a spectrum, in which people with low support needs are considered to be “mildly” autistic and those with high support needs as “severe.” Mild autism is also sometimes referred to as high-functioning autism"

@HelloDoggy you’re quoting out of date materials and your ignorance of the spectrum is shocking.

I am not ignorant. I may not know as much as you, but I do know a bit. The terminology has changed and most people now refer to autistic spectrum condition / autistic spectrum disorders, where once there was a differentiation between Asperger's and autism. What used to be termed Asperger's is now considered a milder form of autism spectrum condition, at one end of the autistic spectrum. If my son was to be diagnosed, I expect this is the end of the spectrum he would fall on. He does not have a more severe form of autism. He is high functioning. I'm sorry I didn't say it in whatever way you were hoping I would say it, but I hoped you would understand what I meant by mild.

I'm sorry I seem to have really offended you somehow. It's a shame we can't all just have different perspective which we each respect. Not sure why some people have to be so nasty to others on here.

The spectrum isn’t a linear spectrum with mild at one end and severe at the other. People with autism have differing needs but not on a continuum from mild to severe.

When people say ‘mild autism’ they typically mean the person’s autism affects others mildly, it doesn’t mean it affects the individual mildly. In order to be diagnosed one must have “persistent difficulties” that “limit and impair everyday functioning”, if someone’s difficulties were “mild” they wouldn’t get a diagnosis.

All ‘high functioning’ means is there isn’t a co-morbid learning disability and IQ is above 70. The problem is many people use it to mean something it’s not.

This and this are articles that explain it better than I can.

@HelloDoggy your child was assessed; they would either get a diagnosis of ASD or not. They would not be told if they were high functioning, “mild” or anything like that. Of course, as a child’s parent, those assumptions may be made. But it is no longer part of the diagnostic assessment.

Your views on a diagnosis purely being a label and somewhat of a glass ceiling is offensive, yes.

The spectrum of Autism is not mild - severe.

@ParrotPoppy thank you, you’ve articulated it much better than me.

I'm sorry you findy way of seeing the world as offensive. It's not meant to be. We just have different ways of understanding people's 'symptoms'. To me, my son's 'symptoms' are just aspects of him that I don't want to label. They are what makes him him. To you they are evidence of a disorder that you do want to label. That's fine and I get that. I'm sorry I don't see the world in the same way as you. But we are all different. I'm sorry my way of seeing the world offends you. But I can't change my way of seeing things just to make you happy.

I have found some of the comments on here helpful and they've made me think, but I don't really understand the purpose of comments which are just basically attacking me.

Thanks Parrot, that looks interesting and helpful, I'll give it a read.

@HelloDoggy but those aspects of your son, the ones that may make him experience difficulty with things, do you have no interest at all in seeking support to help him manage those things better?
None of us want our children to suffer in anyway. I’m really struggling to understand why you wouldn’t want to make things easier for him?

I do want to make things easier for him. I love him.

I do want to support him to manage better in the areas he struggles in. Of course I do. I do agree it is helpful to offer him strategies to manage and cope.

I just don't agree that labelling him will help him. I don't agree medication is the best thing for him.

If he has lots of energy to burn, he's learning that swimming calms him. He finds peace in swimming. He loves it. It keeps him even and content. So he's already found a helpful strategy for his energy.

He stims and he finds that a helpful way to calm excitement and manage over tiredness. He's learnt not to do it in school so he doesn't get picked on. He's managing appropriately.

He can't detect when he's too hot or cold and so wears inappropriate clothes at school. So we are working together on startegies to manage that.

The list could go on. We are developing strategies together. I don't see the need for a label. We all have to manage and adapt to things all the time. I'm impulsive and have to learn ways not to speak non stop.or blurt things out in meetings for example! Life is about learning is it not? All children have to learn ways to manage in this complex world.

I'm happy with the way I'm raising my DS. And I equally think it's fine if other parents would manage a similar child differently, by following the diagnosis route. We are all different. We all do things differently..but I love my son as much as you or anyone else may love thier child.

I don't want to limit him by making him think he will never be able to do X or Y because he has a 'disorder". I don't want him to think there is anything wrong with the way he does stuff or sees stuff. I want him to know his way of seeing and being in the world is equally valid to other people's.

@HelloDoggy the masking (not displaying certain behaviours in front of others) which you state he does at school already, aged 10, is very damaging long term.

My son doesn’t have a label. He has a diagnosis. He doesn’t have meds; you cant medicate the ASD out of someone. My son doesn’t have limits; I would actually say I think he probably has more opportunities than many other children which he is very lucky for, but we and others can make adaptations/considerations in advance so that things are manageable for him.

I am not for a second doubting you don’t love your son, and we all want the best for our children, I just find it sad when some parents are so defiantly against a diagnosis and believe it can only be a negative. My experience hasn’t been negative at all.

I can see why some of the people at the social group have been brought up to think it's fine to ruin the evening for everybody else, if some of their parents are the types from here who follow me onto other MN forums and poke their nose into what I'm saying to try to bully me. I bet their kids have had every excuse made for them to act antisocial, as the parents do it. I guess all online forums are at risk of people like that with no life or intelligence.

@HelloDoggy

I'm curious whether you spend any time chatting with autistic or adhd adults? The fb groups I'm in are full of adults who feel they were let down by parents who didn't support diagnosis paths. Even in a professional networking group I'm in, 5 women recently have sought out adhd diagnoses and they talk about feeling hugely liberated and relieved.

HelloDoggy

I think you’ve got a steep learning curve ahead of you. I did all that with my dc and it has been catastrophic in the teenage years. Severe mental health issues. Masking is damaging and exhausting. Not understanding why you are struggling adds on even damage. You can’t micro manage the teenage years or mental health and actually and when they get to 17 you are pushed out legally and naturally anyway.

Define high functioning. My dc are intelligent, selectively educated and fit in socially in many ways. It has taken a massive toll and both have had catastrophic mental health problems. Not having/ understanding diagnosis has exacerbated the struggle hugely. Not understanding why or being given the tools is a huge handicap in recovery.

Interested to hear how you’ll handle issues. If professionals recommend diagnosis I don’t think any parent shuck be allowed to refuse.Professionals if they suspect autism would treat as if it’s there anyway as it will impact how treatment is carried out. I take it you’d refuse that too which means he wouldn’t get treatment tailored to his needs. If you didn’t refuse you are simply trying to hide his disability by refusing a diagnosis which is wrong and hypocritical.

There is no 'treatment" for ADHD or autism. It's about managing and adapting and using strategies. I don't see why a diagnosis helps with that. To be honest, improbably meet the criteria for ADHD myself. Can't see how it would help me to get that label. I'm happy as I am.

I completely get why you don't want to see your child as being in a state of 'deficit' as the assessment processes inevitability come at it from this standpoint. Working with professionals, beyond that point is, however, a really good means to achieve a richer understanding of one's child and how to enable them to thrive.

The 'opportunity cost' of not getting a diagnosis needs weighing up really carefully especially, as PPs have said, in respect of adolescence and mental health. Once in secondary school your influence wanes rapidly and your child will be navigating difficult social relationships that you will not be able to mediate.

I think lots of us come from a place of acceptance and don't like the idea of medication etc. But just on ADHD, meds top-up chemicals responsible for overly slow brain processing, which can transform someone's ability to participate in a classroom, which in turn can help lifelong self-esteem.

It's not about a label either it's about a sense of identity. Your son might feel he always has to make with his friends but if he was with other autistics he could be his authentic self. We all like to feel we belong.

I was in denial for a while with DD but she started having meltdowns every day after school because of the stress of holding it all in. I was scared she wouldn’t be able to handle mainstream education. We got the diagnosis when she was 10 and I am so glad we did, because it helps so much. She is much less frustrated with herself, more accepting. If someone tells her she is rude or something, she can explain that she is autistic and this really helps her with friendships - she does a lot of research into it and there’s quite a few online communities and YouTubers (I do need to keep a fairly close eye on that those, because there are quite a few unhealthy ‘self-diagnose terrible mental health’ content creators around), so she is less confused about why she is different from other kids - she even has a sense of identity around it. All my fears that she’d be stigmatised were unfounded. She’s doing so well. I’d always go for a diagnosis-at whatever age- it takes the pressure off and brings peace.

Authentic self or another crowd requiring a different kind of masking? 'Identity' never seems to about the individual but about identifying into a group. The Autistic Community online group never allows individual identity - you have to accept the groups strictures. Of course to be welcome into such a group when you have previously felt isolated and apart, can seem very lovely. But it is not about 'authentic self' it is about the group - as a lot of autistic friends found to their cost.

When I was growing up, neurodiversity wasn't something people knew much about I guess. I had heard of dyslexia, but that's about it. I first heard of dyspraxia after I had finished school and it was like reading an autobiography. The flood of emotion as I understood that all the things I had thought were wrong and broken about me were actually a neurological thing and there were others like me. My family weren't supportive of pursuing a diagnosis and as a young adult I didn't really know how to.

I have spent a lot of time trying to fake it. Don't let on that I can't follow multiple instructions, covering up my lack of attention to detail, don't know left from right, am always spilling things or walking in to things. The amount of energy I have spent on masking has been utterly exhausting and got harder with age.

With no diagnosis, I feel like an absolute fraud telling people I have dyspraxia, as I have no proof that it is true. I can't get a diagnosis now unless I spend nigh on a grand kn a private one, money I don't have to spare. School and work would have been made easier by knowing, instead of being told I was useless. I have joined a dyspraxia group to be with others who understand and that does make a difference. I don't consider a diagnosis would have been a label, it would have been an understanding of why life was different for me. I am still sad now that I don't have the ability to get one. I suspect that one of my child is neurodiverse and am absolute pursuing a diagnosis. I can only see that it will help them in life.

Your child will be labelled.
You get to choose wether that is autistic or weird.

The Autistic Community online group never allows individual identity

Perhaps but I wasn't just refering to online communities. A local charity has some fab groups for young autistic people near me and from what I see there are lovely friendships.

'Identity' never seems to about the individual but about identifying into a group.

It doesn't have to though. The sense of identity I both got from my diagnosis and taught my children is that you do not have to fit into any group. I wish I had known as a child navigating my way through school that it was ok just to spend time on my own.

The Autistic Community online group never allows individual identity - you have to accept the groups strictures.

You don't have to join these groups though. I have been in a few over the years and the reason I'm not now is because there is an expectation of agreement. Nobody has to be part of that.