[Help] Child autism diagnosis - help please

[BadFish]

Melatonin is available freely in America - if you know anyone going get them to get you a load from any health store / supermarket. I use it regularly and stock up over there once a year

We get it sent over to Australia.

 

[dolphins]

Melatonin is available freely in America - if you know anyone going get them to get you a load from any health store / supermarket. I use it regularly and stock up over there once a year

This. It's an entirely natural thing that occurs naturally in the body. It's what helps us get to sleep, and is a great way of dealing with things such as jet lag. There are numerous websites which will ship things from the US (eg Amazon) to the UK, basically acting as a go-between.

Anyway, one of my twin sons is on the spectrum and for years now he's been having cranial massages, which help him greatly and have been revolutionary for all of us. We were doing the skin brushing/rubbing thing for a while which sort of helped but similarly when he was bad, he didn't like the touching of the brushing/rubbing despite knowing it would probably help him. Since we tried the cranial massages (which are done along with a normal but not full massage), we've never had to do anything else, and they tend to last two to three weeks on the whole, including during stressful times such as school exams, going on holiday (change of routine/location/food/etc), etc. He's now at university (doing Games Design - the sort of insular thing ideally suited to him) and you'd never know he was on the spectrum, thanks to him still having the massages (took him yesterday).

It won't necessarily work for others, but as many in a similar position will know, you'll try anything to see if it helps. Most reputable professional massagers will be able to do this work.

 

[Thunder Bolt]

I don't like labelling per se as everyone is different, however it can be useful in that most people will be more understanding of someone with a diagnosis and it can also unlock extra support.

My granddaughter was diagnosed just 18 months ago whilst at uni. She got extra support from the uni, a disability allowance to help with uni fees, and has just graduated with a BA Hons 2:1. The extra support was worth it.

 

[Doingitforthekids]

For those struggling, the other point to get is wider support.

Being a parent of autistic kids is draining and can lead to health problems (such as depression) for the adults. You need to ensure you do things for yourself (cinema, walks, see friends) to improve your own health. As you and your partner are the most important people to the welfare of the children then if you're struggling, the child will do too.

Theres also a lot of good support groups out there such as Reaching Families. I know BH and HH have support groups for parents as well and these should be considered if not already.

 

[Doingitforthekids]

Agreed. It’s so hard to get what I meant over on text format on the Internet but sure you appreciate my comment was absolutely empathetic. We 100% could get a diagnosis but for us it’s not really worth the battle. For others it is. I know a number of people (adults) with learning difficulties and they genuinely are so intriguing but also so so so funny naturally. People use it as a gift tbh and I love it

The problem with the diagnosis currently is the 2 year delay it takes to get. However once got, it can provide a number of benefits:

Extra time in exams to help them understand the question
Potential access to a Radar key in situations where going to a public toilet is stressful
Potential access to Disability Living Allowance for additional support

However, the diagnosis is just that, a diagnosis and once got no additional support is given. Its then up to the parents and wider family to give support to the child and themselves.

 

[Sheebo]

Not happy with my tone so will have another go later.

No I read it and it made sense and made me think a bit differently. Everyone does get labelled and a more in depth one does help. The other issue now is it’s so hard to get a diagnosis… it’s not severe I’d say (with our child) , so is it even worth doing… tough one.

 

[BadFish]

No I read it and it made sense and made me think a bit differently. Everyone does get labelled and a more in depth one does help. The other issue now is it’s so hard to get a diagnosis… it’s not severe I’d say (with our child) , so is it even worth doing… tough one.

My daughter was a milder version (level 1) so was not eligible for funding. She also masked well and it wasn't too much of an issue (aside from a complete inability to process her emotions). When she hit her teenage years she started to really struggle and needed much more support. Because she already had a diagnosis it was easy to uplevel it so she could receive the support she needed.

 

[Neville's Breakfast]

My partner’s 7-year old niece has just received a diagnosis of autism (“while it’s difficult to diagnose young children, and more so female children, in xxx’s case she has a plethora of symptoms that put her firmly in a diagnosis of autism”). This diagnosis did not surprise her school, her grandmother, my partner, or me; only her mother was surprised.

Her mother has been and remains in complete denial, and considers her daughter ‘naughty’.

This obviously will not help the situation in any way.

We are currently looking for help in assisting the child’s mother come to terms with the diagnosis and subsequently modify her attitude and behaviour quite significantly, and also figuring out when/how to tell the child of her diagnosis (given it’s inevitable that someone will leak the info to her at some point, and we consider that it should be her mother who does so - at least in an ideal world).

Any thoughts would be greatly appreciated.

I think you have highlighted a rather neglected area when it comes to support. My advice would be to seek out as much information as you/she can from people who have been through the same experience. There is so much to learn including how autism can present very differently in girls and boys and also that it is not one thing. It should not be used as a description. The label is mainly to get access to funding for support. Neurodiversity encompasses all of us and includes people with the diagnostic label ‘autistic’ but that does not mean you can deduce behaviours as all are different.

 

[Triggaaar]

Anyone else been/going through similar? Any tips? Reported this to healthcare professionals and all they say is "keep a sleep diary" fat load of use that is. Tried banana tea as that's supposed to help with something called melatonin - it doesn't. Doctors prescribed us some short term sedatives, which work but won't prescribe again.

Right now, I am not sure how I'll be able to do this for the rest of my life, do things get better? Perhaps I should have posted on the other Autism thread.

No I don't know how you could do that for the rest of your life either. I know you've posted about it before - have you not found anyone else who's had a similar experience? I feel sure that someone somewhere can give you the help you need.

 

[Neville's Breakfast]

It's so tough. My son is non-verbal autistic, and I can't put into words how difficult trying to parent my son is. He doesn't understand the word no, doesn't sleep. Currently been wide awake since 1.30, thinking it's playtime and I have to go to my paid job in 30 minutes. I send the Mrs to the spare bedroom so that she gets some sleep, otherwise day times are impossible for her. I'll get back from work at 6, have some dinner, get him to sleep for 8.30, I'll get to sleep for 10 and then we repeat the same process over again.

Anyone else been/going through similar? Any tips? Reported this to healthcare professionals and all they say is "keep a sleep diary" fat load of use that is. Tried banana tea as that's supposed to help with something called melatonin - it doesn't. Doctors prescribed us some short term sedatives, which work but won't prescribe again.

Right now, I am not sure how I'll be able to do this for the rest of my life, do things get better? Perhaps I should have posted on the other Autism thread.

By co-incidence I watched Gary Neville’s ‘The Overlap’ episode (on YouTube) with Paul Scholes yesterday. Scholes talks about his experiences with his autistic son and how it has got better. He isn’t a big talker but was pretty eloquent and honest about his own feelings. Worth a watch.

 

[Eggman]

I have a case whereby my sons (7 yo) Mum had him reviewed and diagnosed in one morning unbeknown to me. I then finally managed to get hold of the report which shocked both myself, my partner and my sons school all had different views of my son's personality and behaviours to that of his mother.

I'm not in denial per se but am trying to get to the bottom of how this was all conducted. His Mother almost seems desperate and in a rush to have him diagnosed.

 

[Harry Wilson's tackle]

My partner’s 7-year old niece has just received a diagnosis of autism (“while it’s difficult to diagnose young children, and more so female children, in xxx’s case she has a plethora of symptoms that put her firmly in a diagnosis of autism”). This diagnosis did not surprise her school, her grandmother, my partner, or me; only her mother was surprised.

Her mother has been and remains in complete denial, and considers her daughter ‘naughty’.

This obviously will not help the situation in any way.

We are currently looking for help in assisting the child’s mother come to terms with the diagnosis and subsequently modify her attitude and behaviour quite significantly, and also figuring out when/how to tell the child of her diagnosis (given it’s inevitable that someone will leak the info to her at some point, and we consider that it should be her mother who does so - at least in an ideal world).

Any thoughts would be greatly appreciated.

I have two crumb of comfort. The first is that the mother will have to 'come along'* eventually. When the school and all the other relatives are on board it's inevitable. However, it would be useful to perhaps pursue whether the mother herself went through the same experiences as a kid, but was, of course, labelled as 'naughty'. Perhaps she has an inkling that she herself is 'the same'. As someone who was prodded into a diagnosis myself, I know that the strongest reaction to it is complete denial.

The second is that, I assume the kid has language and can communicate. If so, autism can be a gift (I have posted on this before). At present regular society does not deal with autism well but it is getting better. And it will only get better still. As more high profile people with 'mild autism' 'come out' the better it will be for those who are further along, perhaps without language, locked in, frustrated beyond comprehension and self-harming.

Perhaps a little more info about the kid's spectrum of behavours would be informative.

You can PM me if you prefer.

HWT

*As the KGB used to describe techniques for persuading reluctant people to, well, come along. According to Ian Fleming. Completely inappropriate digression is one hallmark of autism. Fancy that.

 

[Harry Wilson's tackle]

My thoughts and I have a similar situation to a degree - do you need to put a man made opinion label on them or do you just need to understand their thinking and relay it to others who have them in their care?

I 100% have a family member who is different and prob on one of these scales - but what’s an official diagnosis really gonna achieve? Just support them and understand them and be empathetic is my opinion…

I think that a label can help, but only if it triggers something.

One of my brothers is much more extreme than me and I wonder whether an upscale on coping strategies may have helped him. He has a great life but he lives like a hermit and gets anxious over trivia, and then comes up with response strategies that are frankly near Ilford*. I have tried to raise the subject with him in recent years, but he blanks me and changes the subject. My other brother appears 'normal' to me but according to his wife he is well up there. He doesn't give a toss, though. Which is what I have found among some of my academic colleagues who are autistic. Incidentally we don't use the term 'Aspergers' anymore. Dr Asperger was, apparently a nazi.

Otherwise, yes indeed - support and understand. My life has been transformed now Mrs T knows what not to do to set me off, and can recognize when I have tumbled (temporarily - it is always temporarily) into the hall of distorting mirrors.

*Barking..

 

[Couldn't Be Hyypia]

Deleted - not helpful comment

 

[Vaughan Storm]

I've read all the posts on here and I noticed that most of the posts are effectively blaming the children/offspring. Briefly someone here said that it's at least partly genetics so there's a good chance that if any of your kids are autistic, then you or your partner probably are too, at least mildly. Not trying to bash anyone but instead just saying that maybe that's what might be making things harder. I'd say that we should all be open to all possibilities and try not to be in denial (although I know from personal experience, that is hard to get past).

 

[Doingitforthekids]

Incidentally we don't use the term 'Aspergers' anymore. Dr Asperger was, apparently a nazi.

Correct, the community has moved away from it due to his links of being a Nazi scientist along with his interest in eugenics.

However, it did previously help provide a useful subset for the "high-functioning' autistic who were highly intelligent but had some difficulties (which should not be overlooked or demeaned).

The label now of Autism Spectrum Disorder therefore covers everybody and is problematic because of the term Disorder as well as covering the very broad spectrum of people.

The care for someone who may be considered as having Aspergers is very different to somebody who may be non-verbal etc

 

[Couldn't Be Hyypia]

My partner’s 7-year old niece has just received a diagnosis of autism (“while it’s difficult to diagnose young children, and more so female children, in xxx’s case she has a plethora of symptoms that put her firmly in a diagnosis of autism”). This diagnosis did not surprise her school, her grandmother, my partner, or me; only her mother was surprised.

Her mother has been and remains in complete denial, and considers her daughter ‘naughty’.

This obviously will not help the situation in any way.

We are currently looking for help in assisting the child’s mother come to terms with the diagnosis and subsequently modify her attitude and behaviour quite significantly, and also figuring out when/how to tell the child of her diagnosis (given it’s inevitable that someone will leak the info to her at some point, and we consider that it should be her mother who does so - at least in an ideal world).

Any thoughts would be greatly appreciated.

It amazing that this has been picked up. It's so often missed in girls.

These might help:

How autism presents differently in girls - Episode 3 'Autism, a parents guide' with Dr. Ann Ozsivadjian and Dr. Marianna Murin

Discussion of the prevalence of autism in girls and the challenges faced. Whether girls get treated differently to boys and what interventions and support are most beneficial.

www.acamh.org

Autistic women and girls

More women and girls than ever before are discovering that they are autistic. Many had been missed or misdiagnosed due to outdated stereotypes about autism. But that is slowly changing.

www.autism.org.uk

https://music.amazon.co.uk/podcasts...n’t-know-they-are-autistic-with-katherine-may (this is brilliant)

 

[Harry Wilson's tackle]

It's quite a shock, my younger daughter was diagnosed as "on the spectrum" over 20 years ago, later refined to Asperger's entwined with ODD.

She's now 28, married with two kids and I've lost count of people who over the years have said "don't worry, she'll grow out of it" - it never happened and she still has her struggles to this day.

She was "naughty" too and went through 8 different primary schools. We got referred to CAMHS, who, for us, were an utter waste of time. At secondary school she was allocated a staff member as a mentor and this worked really well - someone in that environment she could trust and confer with and who understood "her problems".

Not gonna lie, we had some challenging times - best advice for us was work with her, be firm, but steer, not control her. Easier said than done most of the time.

Good luck ...

Sorry to hear that. One challenge is that the person often doesn't know why they are acting up. I get pissed off with things that others can take in their stride. I have had to create an entire life (career, house, and everything in the house) that, well basically, provides me with the things that make me feel calm, and avoids things that make me anxious or angry. And for the last 20 years, by and large, everything has been good most of the time.

But when I was younger and aspects of my life depended on others, it was constant stress and continuous acting up. I was smart enough to not get caught, and managed to blag my way through school, but I did crazy things. This carried on till I was in my 40s.

If I knew what the problem was, and others did too, everything would have been better. It isn't the acting up that is the problem that needs to be addressed. It is the triggers.

I'll give a trivial example. Things put in front of other things in the house, so I can't see the things behind. Too stupid to say anything? So I'd end up kicking off about something else, as deflection, angry and frustrated. And then people think I'm mad. Not sure how this maps to others being firm and steering, but as others have said, the spectrum is very wide. (Mrs T knows about this foible now - TFFT).

 

[Mellotron]

Apologies to piggy back but I have a similar dilemma - family member (still living at home with their parents) who is now late twenties and never been diagnosed, a lot of "they'll grow out of it eventually/just having an extended teenage period etc" but it's pretty clear that that's not what's happening here. I've previously completed a few tests online on their basis, from what I've seen of their behaviour, and tried not to over egg the pudding at all. In all cases they have scored quite highly for autism/asperger's.

Again I worry that the mother (who suffers dreadfully due to their relationship) is at least partly in denial, and the person themselves has little to no interest in getting a diagnosis, partly due to how expensive it is going the private route. I think a diagnosis would (in the long run) help them and those around them massively, but it's not a blood relative and they live a fair distance away so I don't really feel it's my place to make anything happen, so to speak.

The father is entirely detached from the situation, and shows similar traits (but milder) to the person in question, and the mother just blames themself and feels they have failed. It's a really horrible, toxic situation that doesn't show much sign of improving.

If anyone has any thoughts or advice I'd welcome it - a DM also welcome if don't want to derail this thread.

Thanks

 

[Harry Wilson's tackle]

Correct, the community has moved away from it due to his links of being a Nazi scientist along with his interest in eugenics.

However, it did previously help provide a useful subset for the "high-functioning' autistic who were highly intelligent but had some difficulties (which should not be overlooked or demeaned).

The label now of Autism Spectrum Disorder therefore covers everybody and is problematic because of the term Disorder as well as covering the very broad spectrum of people.

The care for someone who may be considered as having Aspergers is very different to somebody who may be non-verbal etc

Indeed. Personally I feel that most resources should be directed towards those who are nonverbal, and even perhaps a danger to themselves. I feel a bit guilty grizzling about people like me. We don't have much of a voice, but we do have one nevertheless.

That said, finding out what upsets 'us' and then working to mitigate against it might have great value to all concerned. One of my final year students from 2 years ago was crippled with symptoms that blocked her ability to work, but she was soooo talented, and finally got her degree and is now doing a PhD. She calls her condition a gift, and I'd agree. It is also of course a curse. My trail of failed relationships is a testament to that.