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?

I think that the diagnosis of autism is so broad, so unspecific now that it is becoming meaningless imho. There are some professionals who think that there is overdiagnosis - but also some kids who are really struggling with huge lack of support and are underdiagnosed - having to face years of schooling with zero support which doesn’t accommodate them. I honestly think it’s a bit of a mess!

No professionals who actually specialise in the area and have real knowledge of it think it is "over-diagnosed". It's incredibly hard, still, to get a diagnosis. That leads to the problems you refer to.

There is an argument that it was a mistake to separate to diagnoses of autism and Asperger's. Although because autism isa spectrum, drawing a line between them is almost impossible. Hence that decision. But there are some people whose spectrum is clearly one side of that or the other. That's not really a problem though, unless someone clueless tries to start drawing a comparison between their non-verbal, autistic boy with learning disabilities and a grown woman with autism and no learning disabilities who is verbal. Most of these problems in understanding - ironically - are because of people who are not autistic trying to compare autistic people to each other and not understanding autism, at all, because they think all autistic people should be like the autistic person they happen to know. 🙄

Or even worse, they come out with this debunked nonsense about autistic people not being empathetic, or being hard to be around compared to NT people. Again, just generalisations and not remotely supported by any study. Just prejudice.

One hopes things will change and all of the idiots who spout this stuff will die off fairly soon. I'm sure there will always be some but I hope by the time my children are adults there will be fewer of them to make their lives miserable.

There absolutely is a legitimate debate about whether a lot of conditions are overdiagnosed. As well as what are underdiagnosed and misdiagnosed. To shut down that debate is not healthy. There has been an explosion in diagnoses and there is controversy over why, and whether this is a good thing. The former head of psychiatry felt it was over-diagnosis, others do not. This discussion needs to be ongoing and held out in the open.

I don’t know what is going on, or what is underlying the huge rise. But I do think it is professional to analyse it objectively.

We also do not often debate - what is the point of a diagnosis and is it always a good thing to be diagnosed? Particularly if there are more mild presentations, or there is no real clear support need. What is expected from a diagnosis of a very broad spectrum issue such as autism. Why not look at diagnosing anxiety for example - or the specific need presenting?

There are also some parents of kids who have listed an awful struggle to get diagnosed and assessed when their child is have very clear and obvious difficulties. Sometimes they have been passed off like those with demand avoidance as ‘being naughty’ or it being blamed on the family - which is awful for everyone as years go passed without the right kind of help.

someone clueless tries to start drawing a comparison between their non-verbal, autistic boy with learning disabilities and a grown woman with autism and no learning disabilities who is verbal the neurodiversity movement says that there is no severity difference, and that the ‘learning disabilities’ are the difficulty and not the autism.

Mumwithsons

There is no over diagnosis we are simply getting better at diagnosis and the 50% of the population( women and girls ) who were going under the radar now aren’t so much. There is more of an awareness that autism can present differently and be hidden by girls.. It is still incredibly hard to get a diagnosis, nobody is being assessed Willy nilly.🙄

I’ve not come across any professionals thinking there is over diagnosis just the reverse. Complete frustration that it takes so long to get a diagnosis.

There are people now who have waited years finally getting the information they should have done years ago.

*some girls. The narrative that girls present differently is harmful for those that don't. The amount of people who assume my DD can't be autistic because she can't mask or assume she can do something because "girls can mask" is shocking.

My boy presents in a more typical "girl" way. The gender needs to be taken out.

No it doesn’t as the gender being kept in stops girls getting diagnosed. Who said all girls with autism mask? They are looked at as individuals and a whole raft of stuff is considered whilst keeping an awareness that tests were designed for males with autism and caused many girls to go undiagnosed.

Were any other women on here diagnosed at secondary age in the nineties (or earlier). It feels like I'm the only one who went through what I went through.

@Mumofsend I didn't mean to imply all girls - sorry if that was inaccurate/annoying, but I do think it's "most" rather than just "some". Females have been underdiagnosed for years and many have slipped through the net. It is well known that they - generally - present differently to boys. This, of course, doesn't mean that all girls present the same, just as all boys don't.

The ancient ADOS tests that were still used to diagnose my DD were based on boys' experiences and have let down so many girls. Several studies have shown this. Should the tests be "gendered"? I don't know, but they should be broad enough to identify different presentations in both boys and girls; and they can't do this without recognising that the previous diagnostic criteria were biased towards boys' presentation.

*typical boys' presentation, I probably should have said.

I was diagnosed four years ago at 32. They still used the ADOS on me. I remember being so confused as to why I was being asked to describe a child's story book. I have a degree in creative writing and took acting classes from age ten until 16 so that wasn't hard at all 🤔 They then asked me to describe a holiday island from a cartoon image. Planning holidays is one of my special interests 😂🤦🏻‍♀️

The psychologist said he wasn't going to diagnose me after the first half of the meeting. The second half was about my childhood and once he heard all about that he rapidly changed his mind 😂

Sex not gender

You're right!

I used gender because it had been used by PP, and it also was the word used in the reports I'd seen. I'm also old enough to remember when gender and sex were used interchangeably.

These days? Definitely sex would be the better word!

I find it very moving hearing about late diagnosed women. I know that hearing your stories online was an absolute clincher for me getting my daughter diagnosed and I am so glad I did. I think it is giving her a solid basis to develop self-awareness and self-understanding enabling her to develop helpful strategies for navigating life into the future. I feel so happy that we are able to help her with this while she is still at home with us.

My husband got an informal diagnosis at the same time (it was deliberate when we did) and that has been so beneficial too. He is now able to look at his past mistakes with warmth and humour instead of the judgemental self-hating talk from before.

As for over diagnosis I find it quite curious. I think there have always been a significant number of people who would be labelled eccentric, highly strung or outsiders who I think were on the spectrum and there have been many families tip-toeing around the peculiarities of a controlling autistic patriarch - afraid to make noise or get something out of place, but because most societies are patriarchal, autistic fathers/grandfathers could be indulged and seen as a ‘character’, or someone who likes everything to be ‘just so’. I also reckon a lot of women having nervous breakdowns and being diagnosed as PD or BP are actually autistic women in a patriarchal society where female low social status means their peculiarities are never indulged. The ongoing stress is corrosive.

Also, I think the internet is a great leveller because you don’t need to rely on subtle social cues, so autistic people who might be quiet and withdrawn or isolated irl are able to socialise comfortably, so I would guess that a disproportionate number of words on the internet are written by ND people compared to NT people, so it can feel like everyone is claiming to be autistic online.

Completely agree with this.

Don't attack me I didn't make the decision.

I didn't say I agreed with it I said I understand why they might as a blunt instrument it makes sense they probably don't want to spend time and money assessing each individual. Just as they discriminate for other things such as mild asthma ( my nephew was refused due to this hasn't had an attack in years)

I then went on to say that it isn't fair to the majority of autistic people who aren't violent.

What is expected from a diagnosis of a very broad spectrum issue such as autism. Why not look at diagnosing anxiety for example - or the specific need presenting?

Because then there is inappropriate treatment in many cases because the anxiety is a symptom of autism. It isn't the underlying problem. Things like CBT which are commonly recommended for anxiety because they help a large percentage of NT people are unhelpful to a large proportion of autistic people and in some cases actually cause further harm, because the implication is that you can control the anxiety by changing how you think. But autistic people generally experience anxiety for very different reasons - it is caused by their external environment and not possible to rationalise away. This then makes them feel they have failed. Again.

Autism can't be "cured" and isn't an illness. There is plenty of research on the damage that is done to autistic girls/ women in particular from being diagnosed with anxiety and depression etc and the real issue they need appropriate support with - their autism - being missed repeatedly. This is bad enough when it happens due to medical staff with insufficient knowledge, but to actively recommend that the autism diagnosis process is avoided when there are indicators of autism on purpose is bonkers. For what purpose? If the person doesn't have autism, then the process will clarify that for them. People aren't getting diagnoses given out randomly, the criteria are very clear and strict. If you have any data on the number of people that have been diagnosed in error - to support your claim that it is over-diagnosed - then please do share it.

I won't hold my breath, because we both know there is no data to support your assertion.

In short the autism itself is the specific need presenting. The autistic person needs to be able to understand and accept themself and focus on their strengths, be kind to themselves about their weaknesses and fundamentally to gain the self-understanding of why their experience is like that.

I used to think there were so many things "wrong" with me. Socially awkward. Miscommunications with people. Told I have SAD (sensory issues). Told I have depression. Told I have anxiety. I felt I was so messed up to have so many problems and overwhelmed by the idea that I should "fix" them.

No. I had undiagnosed autism. Having the diagnosis has been life changing. I can now understand myself, what I need, why I am different, what I struggle with (and be ok with that) and what I excel at (rather than beating myself up about the things I can't do and bashing my head on metaphorical walls trying to get better at those things when I literally can't no matter how hard I try.

All of my friends diagnosed later in life have a similar story to tell.

It is the people who say that a diagnosis is a "label" who are perpetuating the stigma that autistic people face. Diagnosis and proper support is such a relief. And all of the autistic women I know who were diagnosed in our late 20s- 40s or even 50s in some cases have found it so positive. The only downside is dealing with the knowledge of how different life could have been had our parents made sure we had this support as children instead of struggling for decades.

I used to think there were so many things "wrong" with me. Socially awkward. Miscommunications with people. Told I have SAD (sensory issues). Told I have depression. Told I have anxiety. I felt I was so messed up to have so many problems and overwhelmed by the idea that I should "fix" them

This so could have been be talking. I went in to my autism assessment with diagnosis of social anxiety disorder and clinical depression. Was medicated for them with drugs that made me feel like a zombie and had tried several different types of therapy, which just made me feel worse. No I don't want to draw a picture of how I'm feeling, or talk about emotions I don't understand thank you very much.
Strangely enough since getting my ASD dx I've come off all meds, just the knowing is enough.

It's swings and roundabouts. If your child is autistic they will undoubtably have traits that will be recognisable to others. By not having a label your child may well just get a different label - naughty, weird etc. a diagnosis would explain those behaviours. It also depends if your child needs support- 1-1 etc. it is hard on public schools to get that support, no diagnosis may make things harder.. it's also part of a persons identity, not accepting a part of your child can be damaging to them.

The only downside is dealing with the knowledge of how different life could have been had our parents made sure we had this support as children instead of struggling for decades.

What support could you have had?

The only downside is dealing with the knowledge of how different life could have been had our parents made sure we had this support as children instead of struggling for decades.

I can understand that. However, we haven’t known enough about autism for parents of people in I guess their 40’s or older to have any clue you needed help or had this condition.

The only downside is dealing with the knowledge of how different life could have been had our parents made sure we had this support as children instead of struggling for decades.

I can understand that. However, we haven’t known enough about autism for parents of people in I guess their 40’s or older to have any clue you needed help or had this condition.

I agree, we didn't know enough about autism, but at the same time so many parents were not naturally child focused. My own experience is extreme as I did suffer neglect but the element of 'why did you not help?' still applies to those with ordinary parents. They wouldn't have know it was autism, no, but they absolutely would have known their child's struggles in certain areas, and the majority were disciplined and left unsupported. So they didn't know it was autism, not a hell of a lot of parents ignored the signs that their child needed help.

Yes, a lot of parents ignore signs a child needs help, I do understand that and that extends beyond this subject. But my DD is a late teenage diagnosis, she’s an adult now, and at primary level I really didn’t see signs she needed help and no teacher raised anything. When I started to raise questions at the end of primary, with professionals including doctors, other explanations were given which I think stemmed from at the time it being seen as exclusively a male issue. Then we waited on the NHS a long time before our school paid for it privately. In my DHs case, he has Asperger’s, his mother died when he was young so a lot of his social issues were explained by that. I actually think his parents were awful in general, but I can’t blame them for not asking for help or diagnosis for something that at the time didn’t exist in the medical field. They just thought he was quiet, intelligent and maybe had hearing problems. I’m obviously not commenting on members here who are discussing their own lives and were genuinely neglected, I’m making more general comments about parents of now adults. Things were still hard to understand or know about 10 years ago. There wasn’t much autism awareness.