Self-diagnosis: bad or not?

[daisy5678]

I was having a conversation in RL the other day about autism, ADHD and a few other 'invisible' disabilities. She was talking about an aquaintance who, in her words, "has decided her child has ADHD because he's hyper and disobedient. The doctor says to try firmer boundaries as he's too young for a dx (being only 3.9) so she's ignoring it and self-diagnosing and telling nursery and prospective schools that he has ADHD".

Her point of view is that there's too much of mums getting info off the internet and deciding that they're qualified to dx their own children and not believing health professionals or being open to alternatives e.g. stricter or more positive parenting might be needed or they need more exercise or something. She said lots of parents 'chase' or 'pay for' dx's to help get their kids DLA, statements or even just an excuse for their behaviour. She said she didn't mean me, but sees a lot of kids at her workplace who are just clearly left to their own devices a lot at home who, with a bit of structure, do not display the behaviour in keeping with their ADHD label that their parents have got them. She said the problem with subjective disabilities like ADHD (and milder ASDs) is that they are very subjective and most of the dx's are made from self-reporting from the parents, which is biased. She (obviously) thinks self-dxing is very very wrong!

She gets very cross with parents who insist their child has ADHD/ dyslexia/ ASD without any medical back-up or even making an appointment, saying they just 'know'.

I can kind of see what she's saying in that I'm always a bit when people decide their child definitely has a certain disability because of some odd behaviour and won't accept what doctors/ consultants say, providing of course that there's no hidden politics going on and the full tests or examinations have been carried out properly, as I think, well, they're the trained ones (and parents only know what they read, some of which is very subjective)...I think that if the dx or non-dx can be justified then that should be that because mis-dxing a child would be very wrong.

BUT...I am in the very fortunate position of having had J dx'd very easily with the ADHD and the autism. With the ADHD, my concerns were listened to and even though I had to do a parenting course "to rule out lenient or harsh parenting influencing his behaviour" , I could kind of see that they had to do that before dx-ing, to rule out my parenting being the problem. I DO know that not everybody has the same easy ride. I know that waiting lists are very long in some areas,politics over-ride honesty in some places, tests are not carried out properly in some areas, staff are not experienced enough sometimes, judgments are made too quickly sometimes. I also believe very strongly in a parent having a good instinct sometimes when something is wrong with their child (though think this is limited if your child is a singleton) and that, without parents having an inkling that something is wrong, and sharing that with a doctor, lots of kids would go un-dxd.

I see a lot of adult on Aspie forums who have self-diagnosed and do get a bit when someone just decides, in a very biased way (as it is about them!) that they have this disability without any medical knowledge or training...but then again, perhaps they do have it and have the brains to recognise it and that makes sense for them.

What do you think? I'm coming down on the side of it being good that parents are more aware and can spot a possibility of a dx but also thinking dxs should be formal before that dx is finalised in the parents' and especially the child's heads. (but wish the NHS was more able to make these decisions fair and transparent really)

I think it's two different problems, in a way. If an adult has self-dx'd their child, and won't take notice of professionals, there's a risk to that child from having the wrong treatment/therapy/strategies or from not getting treated for whatever they do actually have.

For adults, I guess the same could be true, but there are big concerns amongst many adults with an ASD, for example. If you have a full dx, it's there on your medical records. What does it do to your job chances? Your insurance chances? Is there any treatment or therapy out there for you even if you do get dx? (Often absolutely none available anyway).

And, to be honest, some of the online ASD testing for adults is very, very accurate in terms of an initial idea (though obviously not a full dx). If people answer honestly and score above 37 on the AQ test, there is an almost certainty that a professional will also find they are ASD, for example.

Also, a lot of the tests online etc require a lot of self-insight, and many people don't have that degree of it. It's why a full dx takes into account past history, asks their GP and their family etc. For example, if you ask many aspies if people find them to be boring, they'd probably say "no", but that's because we can't tell! So answering correctly could be much harder than it looks.

yes i agree with Tclanger,to some professionals DS who has AS is "mild", yet he spent 2 years out of school due to his high anxiety so thats not very mild is it?

We also had all sorts thrown at us,it was because i had PND,it was because his biologial father doesnt see him,it was because i wasnt strict enough blah de blah and there were plenty of "professionals" who dismissed what me and DH were saying,it took us years to get him dx,d and i still feel very very bitter over what hoops we had to jump through to get it,including my GP telling me that i was the one with the problem and offereing me prozac.

The exact same is happening with DD,only this time we know the stupid waiting game that they play and have just written a very big complaint letter about CAMHS who have a couple of weeks ago said it was our parenting that was to blame for DD,s toileting skills and that she doesnt have an ASD,so to me i feel a bit about people saying "oh these parents who self diagnose" and then turn around like the 2 faced back stabbers that they are WHEN your child receives a dx to say they suspected it all along.

Also i "self diagnosed" myself with AS 4 years ago,then i went to see a psychiatrist on the nhs who dx,s AS and he DID dx me with it,i have it in writing that i have AS,so its not all about people wanting to abuse the system for DLA etc etc

TC, I don't think ASD, in particular, is subjective. J's assessments seemed very thorough and quite standardised to me.

Jenk, I was thinking of you when I said to her about those people whose dx is not done on an open basis, but affected by politics. Bonkerz too - there's something about dx's in her hospital's area being given only on a certain basis but her area needs the dx to have a different name for school places. I also remembered someone's dc "not being autistic" (according to a doc) because they made eye contact!

I guess I'm trying to take away the crap doctor variable and saying should a self-dx become an official label for a child just because the parent doesn't agree with a (not incompetent or political or lazy) doctor, or because a parent hasn't yet been to a doctor?

tbh I think it is easier to modify your own behaviour/parenting style than it is to change the behaviour of a child with ASD or similar.
So personally I would follow any parenting advice route etc rather than just search for a dx & struggle on with difficult behaviour.
Because a DX alone does nothing to improve family life.. its what help you can access with that dx that makes parents fight for it.
You as a parent still ahve to put in the hard work to see results & that may still mean changing your parenting style to suit your child.
BUT the profs should NOT use this as a get out & money saving exercise just to put off a dx & costly interventions.

So I think the "game" can be played by bth sides. Wouldn't it be lovely if ASD & alike could be dx with an XRAY or blood test.

yes its ridiculous that politics play a part in dx,ing children,certainly in DD,s case HAD she not had the ASD dx withdrawn,we could have got help from an OT or the autism outreach team and probably she would be toilet trained by now,but all the sticker,star charts in the world havent worked with it,ok maybe for 2 days they have but that is the rubbish they,ve been spouting for 3 years now, i know me and DH are excellent parents and we,ve had to adopt our parenting skills as we know that 99.9% of DD,s difficult behaviour is down to not understanding something or because her routine is disrupted, tbh if we were offered a parenting course i would tell them what they could do with it,like i did with DS i find that quite offensive actually that that is the only thing they offer.

A bit at your friend. Firstly because of all the politics around DX/LEAs etc; given the "system" I strongly feel underdiagnosis is the problem not over diagnosis. Secondly because much of the best help comes from outside the system and away from the medical "experts" it is given by parents, bought in help and if you are lucky,understanding school staff - private SALT advice and MN have helped DS far more than any NHS advice has.

Whilst I would be uncomfortable with saying a child had an official DX when they didn't, I think it's very sensible to be pessimistic when talking about your child's difficulties to mainstream schools/pre-schools, to suss out whether the school will be able to support your child's likely needs on starting. When going round m/s schools for DS, I made it crystal clear DS had severe language delay and was awaiting assessment for ASD.

I recently had a long conversation with DS1's SALT as to how PECS would have likely have been great for him about a year ago. I do wonder if rather having lost sleep wondering whether he had ASD or not from about 22 months, it would have been better for me to think like he had and get proactive about it. His language did explode by itself but he is unable to communicate his needs at preschool/nursery (he does talk but has never said if he needs the toilet, is hurt, is upset about his zip being undone etc) whereas if we had gone the PECS route he probably would be able to.

"Experts" aren't beyond being wrong, certainly the first community Paediatrician we saw suggested any problems DS1 had were as a result of my depression and when he waved goodbye she said "see he waved, he is not autistic"

So whilst I can see the potential of self-diagnosing wrongly and taking the wrong path is some cases waiting for a DX (DS was 3.2) can mean wasted opportunities.

Hmmm.

I think maybe your friend is seeing a lot of - what do you call it - "guest behaviour"? Kids with relatively high-functioning variants of ASD or ADHD who respond to the pressure to conform in a school or nursery environment by "faking" coping and then take it out on the parents in the safety of their home environment. So the parents are mopping up the mess caused by the school/nursery's refusal to accept the child's condition, while the ed setting adds insult to injury by then using this as evidence to blame the parents. "Well, I see he only does it at home..."

But I'd cheerfully accept I'm biased. I've kept score where myself and the medics have disagreed (Mummy 12, medics 4). DD1 would be dead if I hadn't stood my ground. One professor of neurology told me she was "neurologically faultless". Soon after, they discovered only 1/3 of her brain works. This is not because the doctors are rubbish, but because this stuff is difficult and poorly understood. And given that, what any moderately observant parent has to say is worth listening to.

I can see that self diagnosis is often going to be a problem as there could be a lot of contributing factors with regards to motives, confusion etc. But the position I am in is a sort of middle ground right now - a chartered psychologist I spoke to on the phone for an hour, very thoroughly, said "I can definitely say DS will be on the spectrum" but encouraged me to get it finalised on the NHS as it could cost £900 to do through her. So I have been in a long ongoing struggle to get that done which you all know about. So I have begun telling friends & family that DS is ASD. DH and I made that decision, even though it isnt "written down" on his NHS record, because DS was showing these strong ASD traits often and we felt that to those we were close to we wanted them to know there was a real problem there, and not that DS was being naughty. Have we self diagnosed? I would say we have not because the psychologist who is a specialist in DX young children with ASD was so very confident he was HFA/AS. Has he been officially DX? No. He hasnt. So in that sense... yes we have done it ourselves.

But we have had to. He was suffering very much. I am thankful to say that thanks to many MNers and research I have done and books etc we have already made changes in his life/routine which have minimised the sress he has been under, while not erasing it totally. If I had not taken matters into my own hands I truly dread to think what our daily life would be like right now. When the NHS "loses" your referral 4 times in a row and your HV does nothing but suggest TO and high IQ, ignoring all else, what are you going to do? Sit back and watch your child sink further into themselves and their pain? Part of being able to help DS has for me been able to think of him as having a real problem.

Having said all of that I do fully expect him to be DX on the NHS very soon as I will not stop until they recognise this and offer him the help he deserves.

Sometimes on very good days I worry he is "normal" and it is all my fault. But I know that isnt right deep down. So I have to follow it through for his sake.

The situation is shit for you, hereidrawtheline. And I think your situation is a tough one - he's been dx'd by someone who's not met him and you won't feel secure about the dx until he's been thoroughly tested by a consultant/ paed/ psych or whatever. BUT you are starting interventions that will do him no harm even if he wasn't ASD - routine, structure etc. so you're doing something positive. ..and if he is ASD, you've started early.

I only wish I'd been more knowledgable about ASD I was so convinced by the nursery's suggestion of ADHD that when we were referred to the paed and then to CAMHS and ADHD was dx, I totally accepted it. The psych we saw then was totally convinced it was ADHD, I was, and that was it. Until 18 months later when we saw a new psych and she spotted the autism straight away. I argued and I'm so glad that I didn't keep arguing because once I started reading (and came on here ), I totally got it. I'd just not understood autism before. So I was really a case of a parent NOT knowing best and the professionals having not known best in the first dx but then completely knowing best in the second dx with the second psych.

Meant to say, there are so many things I'd have done differently if I had the knowledge I have now. We all saw his horrific behaviour as being totally within his control and he was punished for a lot of it whereas I now know that a lot of it was his reaction to the stress he would have felt in the busy, noisy, sensory-overloady environment that was nursery...so he reacted violently and aggressively.

Thanks. I have to say as well I hope none of you feel I shouldnt be here, I hope you think I am doing the right things. I feel really insecure about the whole situation and trust me I am constantly second guessing myself.

Hope your appointment comes through soon.

thanks, me too! I chased it up again Friday am waiting to hear back.

This is interesting. I took an online test the other day which is formulated by the Cambridge Autism Research centre...Average score for NT people is 16, average (I think?) for people on the spectrum is 32. I scored 47.

I've had various Dx since I was a child - OCD, anorexia (atypical) and anxiety/depression. Life has been a long struggle and I've always felt like a freak - so for the past few days have been struggling to get my head around having a 'label' and what that might mean.

I also get very at people who say 'I think I have Aspergers' but having taken that test I do wonder if it would explain, well, nearly everything that's ever happened.

I already get DLA for anxiety/depression, so it wouldn't make a financial difference...but psychologically it would. For a start I'd be able to say to people when I meet them, 'I'm sorry, no I don't want to go to all these social gatherings because I have something wrong with me' rather than try and lie/ excuse my way out of it constantly, knowing they will think I am a freak or a nasty person if I don't want to socialise with them.

Saying that, it's not easy apparently to get a proper assessment. Our nearest is almost in London. I feel terribly self obsessed considering going to all that effort just for something I perceive might be a problem for me - rather than concentrating on my children for instance. Plus there's nothing anyone would do anyway as far as I can tell, even if I was Dx properly.

It's just a minefield.

Flightattendant27, strictly speaking you might want to phrase it as "I'm sorry, no I don't want to go to all these social gatherings because my sensory system is so highly sensitive that it makes it impossible for me to join in effectively". It's not exactly 'something wrong', it's 'something very different'. There's often tons of things we're good at, but until we learn about the positive things, we've probably never even thought about it properly before. I have very easily-overloaded hearing (can't hear against background voices etc) but I can tell if a musical instrument is even slightly out of tune, I can hear oncoming traffic way before others can, I can tell if machinery is about to break down before others can.

I have very easily overloaded sight - can't stand being near a flickering lightbulb, but that same sensitivity lets me see patterns that others miss, lets me see detail that others don't, etc.

It's often different, rather than 'wrong', if you see what I mean?

Some things are a pain in the proverbial, yes. Not being able to get quick detail on who's who is a constant struggle, for example. But with no filing clerk in our brains to go find info on someone, it's not surprising it takes us longer and results in a more sketchy picture/recall of info about someone.

Amber thankyou and I'm really sorry if it came across wrongly, or offended anyone.

I was posting in a hurry and thought 'maybe that's the wrong phrase' but didn't have time to figure out the right one.

I know a couple of people whom I think have AS and it wouldn't occur to me that there was something 'wrong' with them, but they are different and might be perceived as having something wrong by people who don't know about it. If that makes any sense.

I was kind of talking from the perspective of someone without that knowledge earlier...ie the people I feel would judge me on my social fears.

I'm probably digging a deeper hole here so will shut up...

I get what you mean about the sensory things. My music teahcer in primary school told my mother I was the most musical person she had ever encountered, I don't have perfect pitch but could sing every part of say a four part piece - and tell her who was getting a note wrong somewhere. (this is what I've been told anyway!)
Teachers have always said things like that too, and my GP last year he had never met anyone with such a good recall of medical knowledge. (== hypochondriac!!)

so I guess there are good things
just finding a way to channel it I suppose.
Thankyou for pointing me in the right direction and once more sorry.

Flightattendant27, I definitely didn't think you were being rude in any way. I was trying to think of a more positive way you could think about your own situation.

Having read the testimonies on this board, I think it is quite understandable that parents resort to "self-diagnosis" as a convenient shorthand to let the outside world know what to expect.

Another thing that might make parents resort to this "self-diagnosis" is the fact that under our assessment system parental observations are often ignored and not even recorded in the name of "objectivity".

Thanks Amber. Have been worrying!!