[Help] Child autism diagnosis - help please

[Goldstone1976]

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.

 

[Green Cross Code Man]

I have worked alongside many autistic children. They almost all, like other children, make enormous progress in education given understanding and time. It can be a challenging endeavour, both at home and school, especially at home I imagine. But there's often more hope when a diagnosis is made as funding may or will be more readily available to help support the child. It will also in the long run help mum as she will start to understand that many of her daughter's behaviours are not simply 'naughty' but coping strategies that her daughter's learnt in order to make sense of situations or to feel safe. It can be a big shock to hear that offspring have autism. I think it's likely that your partner is going through momentary grief and disbelief, but there will be a time that she realises the situation won't simply change due to her resistance and she'll accept it once the dust has settled. I hope for her sake and your family's sake that is soon.

 

[Goldstone1976]

I have worked alongside many autistic children. They almost all, like other children, make enormous progress in education given understanding and time. It can be a challenging endeavour, both at home and school, especially at home I imagine. But there's often more hope when a diagnosis is made as funding may or will be more readily available to help support the child. It will also in the long run help mum as she will start to understand that many of her daughter's behaviours are not simply 'naughty' but coping strategies that her daughter's learnt in order to make sense of situations or to feel safe. It can be a big shock to hear that offspring have autism. I think it's likely that your partner is going through momentary grief and disbelief, but there will be a time that she realises the situation won't simply change due to her resistance and she'll accept it once the dust has settled. I hope for her sake and your family's sake that is soon.

Many thanks for your thoughtful reply.

A small point of clarification: it is my partner’s niece with the diagnosis, not my partner’s daughter. This point negates nothing of what you say/advise.

 

[Sheebo]

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…

 

[Affy]

One of my boys has autism. My wife is a paediatric sister and now works in a SEN school as a specialist nurse so she picked up signs quite early and we got his statement just before his third birthday.
We explained to him from then on that he has a different way of thinking and his brain works differently. I didn’t want to accept it at first but quickly came to terms with it (which I should have done earlier).

The thing with autism is that the spectrum is soo wide and vast and despite a common diagnosis, no two children are the same. We are very lucky in that our son is high functioning, mobile and verbal so we do not have all the challenges some parents do. He even plays football with the Albion Foundation.

The only advice I would offer is to find out what works for your niece and be patient with her. Everyone needs to understand how she thinks and how she sees the world and then, it becomes a bit easier Because you are working with her rather than trying to force her into a world she doesn’t see the same way.

Lastly, people will likely judge you/her. Try your best to Ignore them. They are ignorant and don’t let them get under your skin. There are lots of support groups and advice which may or may not be useful. You need to cherry pick the bits that work for you.
Send me a PM if you want to chat more privately.

 

[Vaughan Storm]

It is hard to accept those sort of things, I had the issue myself, I suspected I might have it but it took me years to find out whether it's true or not as I was too scared to find out. Her mother isn't the only one I'm sure in this situation, it's far from ideal.

 

[Green Cross Code Man]

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 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.

 

[Sheebo]

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.

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

 

[jackanada]

I've plenty of experience with autistic children but none with an autism denying parent.
Denial is the first stage of grief and to her it may well feel like a loss. Give her some time to process first.
Her partner can liaise with the school senco on resources to help her get a handle on this once she's more able to engage

 

[Triggaaar]

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…

It's easier to support someone when you have a better understanding of what support they need. A diagnosis can also make it easier to get help from the services available.

@Goldstone1976
I don't think you need to worry about when/how to tell the child at the moment. Obviously that's a decision for her mum, but since her mum is struggling with it herself, that's all you need to worry about at the moment (IMO).

Parents often think they're children are perfect (they're not) and sometimes accepting that their child is disabled can make them feel that their child isn't perfect (it shouldn't). Sometimes parents of physically disabled children will use a buggy for transport well past the age that it's appropriate, rather than switch to a wheelchair and thus accept that their child is disabled. I realise that your partner's sister thinks her daughter is naughty rather than perfect, but it's still possible that she has reasons to reject the possibility of having a disabled child. Maybe that's not the case, but in case it is I'd just do my best to reassure her that the diagnosis doesn't lesson how wonderful their daughter is, but instead it's a positive step to best being able to help them. They're not naughty after-all, they just see things a bit differently than others.

 

[Shropshire Seagull]

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 ...

 

[Goldstone Guy]

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 might be stating the obvious but charities are often useful for general support and advice of this nature:

National Autistic Society

We are the UKs leading charity for autistic people and their families. Since 1962, we have been providing support, guidance and advice, as well as campaigning for improved rights, services and opportunities to help create a society that works for autistic people.

www.autism.org.uk

 

[Solid at the back]

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.

 

[Affy]

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.

The sleep diaries are required for prescription of melatonin. There is a process (more a ticking the box exercise unfortunately) but my wife deals with sleep deprivation a lot and she says it’s one of the hardest things for the parents as there is no respite. Best thing I can suggest is just keep on and keep asking for repeat prescriptions of melatonin. You will have to jump through the hoops to get there but it’ll be worth it in the long run. Like the OP, send me a PM if you would like to chat more privately.

 

[Springal]

The sleep diaries are required for prescription of melatonin. There is a process (more a ticking the box exercise unfortunately) but my wife deals with sleep deprivation a lot and she says it’s one of the hardest things for the parents as there is no respite. Best thing I can suggest is just keep on and keep asking for repeat prescriptions of melatonin. You will have to jump through the hoops to get there but it’ll be worth it in the long run. Like the OP, send me a PM if you would like to chat more privately.

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

 

[jackanada]

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.

Melatonin quite often just doesn't work on those with ASC. We were considering it for our son but while he's still often up for hours in the night locking away every screen and snack when we go to bed means he goes back to bed a bit quicker.

GPs have a high threshold to be able to prescribe, though one did say if you want to try just buy some on the internet!

 

[Green Cross Code Man]

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.

I can imagine the difficulty you face. Sleep deprivation makes normal life very difficult. I have short-term experience of this with my second son, although he is not autistic. For some reason, for the first 10 months of his life, he couldn't sleep for more than a hour at a time and frequently once he was awake, stayed awake and all through day as well. Then abruptly it stopped. I was a house husband at the time and to say I struggled was a huge understatement. I can only sympathise with your predicament and wish you well hoping it gets better. How old is your son?

 

[Doingitforthekids]

It's very very difficult for any parent to deal with. We have 4 with suspected autism (1 diagnosed) and I went to the cinema last night and came back to find my wife in tears constantly questioning whether what we're doing is right, whether they are just naughty, whether they're spoilt etc.

Awareness and reading around the subject is the best way. OP, I'd suggest for your partners relative tries reading a couple of books.

Fern Brady has released a memoir about her struggles with autism and Aspergirls is another book written by female adults which is highly recommended. Both are available from local library services/ Amazon.

Autism is often genetic, could this have come from the mother and therein she is coming to terms with her own struggle through the years?

 

[BadFish]

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…

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

 

[BadFish]

It's very very difficult for any parent to deal with. We have 4 with suspected autism (1 diagnosed) and I went to the cinema last night and came back to find my wife in tears constantly questioning whether what we're doing is right, whether they are just naughty, whether they're spoilt etc.

Awareness and reading around the subject is the best way. OP, I'd suggest for your partners relative tries reading a couple of books.

Fern Brady has released a memoir about her struggles with autism and Aspergirls is another book written by female adults which is highly recommended. Both are available from local library services/ Amazon.

Autism is often genetic, could this have come from the mother and therein she is coming to terms with her own struggle through the years?

I have been through this over and over since before my boy got diagnosed 15 years ago. It has ultimately lead me to seek out my own diagnosis. It is often half-joked that parents should be eligible for a diagnosis when they get their children done. So very accurate.