[Help] Child autism diagnosis - help please

[Harry Wilson's tackle]

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

pm incoming...

 

[Mellotron]

pm incoming...

Thanks buddy.

 

[Joey Jo Jo Jr. Shabadoo]

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 have two boys who are both autistic, but I don't consider it a label, it doesn't define who they are but does help when it comes to getting support which they need. Without the diagnosis my youngest would be struggling to access mainstream education, instead because of his diagnosis he is in a school that is absolutely geared up to provide an excellent education for a child facing the challenges he does.

My oldest is still in mainstream school but since he started secondary school and the change in environment that brings to schooling he's struggled, but again the school have been supportive and been able to put provisions in place to support him. I'm now waiting for him to be assessed for non-verbal tourettes because he's struggled with ticks and again getting a proper diagnosis will help not only him but the school when it comes to understanding and further support.

My advice to any one who suspects their child may be autistic, dyslexic or has any other condition is, seek advice, speak to the school, medical professionals and try and get them assessed. You wouldn't hesitate if you suspected they were ill and although these conditions aren't an illness they do need diagnosis as in the long run it will help not only the child understand why they see the world so differently but it will help make sure they get the best possible start to life too. A diagnosis isn't a magic wand, it doesn't suddenly make everything better, in fact when you first get it there are way more questions than answers but as the dust settles it helps massively. There is so much more support available when you have one.

 

[Comrade Sam]

With everything funding for help is scarce and services stretched. Whilst this has completely hamstrung CAMHS and made them close to useless, they have helped us find a world of charities, support and literature. I would advise reading widely and everything that appears naughty (shit definition of anything) and awkward becomes clear and will change how people approach their own children. It is just a different normal and very common and a diagnosis helps to put things in a slightly more helpful order. Ultimately both the child and family needs to live their best life and that takes hard work and countless backward steps. I have worked as a Teacher with many autistic children whose parents had refused to have a diagnosis, this has made life harder for the child, their parents, their classmates and school staff. Every class has at least 2 and sometimes as many as 8 or 9 children with autism, ADHD or both (some say ADHD is on the spectrum), all of whom need to be understood so they can have the best quality of life. Nobody is normal, but some of us need more help to cope with this quite f***ed up world and underfunded schools and social services. There is no shame in having an autistic child, unless they support Palace obviously.

 

[severnside gull]

Even 20 years of working with young people with autism I can’t really add a great deal to some of the very thoughtful responses here. The autistic spectrum is so wide and the journey being travelled is so varied. In my experience it is the response and support of the parents and wider family which is the greatest influence on future educational and behavioural outcomes.
Try to support them and lead them towards gaining a greater understanding of the nature of autism through reading and discussion. Her diagnosis so early is a blessing available (sadly) to very few and is a potential opening to funding and practical support until adulthood but like very door it only has purpose if you go through it and that is the step she will most need help to take.
It’s clear that you and your partner are prepared to help her and that is massive. Well done.

 

[Goldstone1976]

I'm in bits here.

The thoughtfulness, care, and offers of assistance to a total stranger (to most) are heartwarming and so very kind.

There is a lot here for my partner and I to digest as we try to figure out how best to help my partner's sister and her child. We will continue to read this thread as responses come and may well post more &/or ask questions - here or via DM - as our long journey of discovery starts. We're starting with reading up on the topic (neither of us have any prior experience of autism in children, though I have employed and continue to employ plenty of adults who are on the spectrum but well functioning, and my partner is a research psychologist at a London uni - though into adolescent psychosis, a completely different field) with the aim of understanding as much as we can and also with the aim of trying to persuade the child's mother to both read herself and get assistance from the health teams and charities that exist.

Thank you all so much; we're so touched.

 

[Live by the sea]

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…

The official diagnosis is I understand very helpful if the person is school age because it means the school has to take this into account and make allowances rather than just thinking their badly behaved .

 

[KZNSeagull]

One thing to look at is the National Autistic Society's Earlybird and Earlybird Plus programmes. We used these when our son was diagnosed 20 years ago and they were very helpful in our understanding of autism and how to get help, support etc.

 

[Doingitforthekids]

The official diagnosis is I understand very helpful if the person is school age because it means the school has to take this into account and make allowances rather than just thinking their badly behaved .

Its dependent on the school really. The referral to the NHS is often better if the school's SENCO is involved. However, the quality of this provision differs greatly between schools.

Its therefore likely that conversations may be bring have and allowances made before diagnosis.

What a diagnosis can lead to is an EHCP which is a legal document which the school must fulfill such as 1 to 1 care as an extreme example.

However, WSCC are resistant to issuing these due to the additional costs/effort involved.

The problem is also that some specialist schools, such as the one in Hassocks, will only take children with autism if they have an EHCP in place.

 

[Live by the sea]

Its dependent on the school really. The referral to the NHS is often better if the school's SENCO is involved. However, the quality of this provision differs greatly between schools.

Its therefore likely that conversations may be bring have and allowances made before diagnosis.

What a diagnosis can lead to is an EHCP which is a legal document which the school must fulfill such as 1 to 1 care as an extreme example.

However, WSCC are resistant to issuing these due to the additional costs/effort involved.

The problem is also that some specialist schools, such as the one in Hassocks, will only take children with autism if they have an EHCP in place.

Good point - I didn’t know that

 

[Half Time Pies]

There's some fantastic advice on here.

Neurodiversity tends to run in families and one interesting thing that I found following my sons diagnosis was that some members of my family really couldn't cope with it as it potentially opened a bit of a can of worms. In my case it got me looking at my own situation and I was subsequently diagnosed with severe ADHD. I am pretty sure my Dad and my Brother are also neurodiverse and my Grandad definitely was.

There is a certain narrative that develops in families about the way people behave and often in families where there is undiagnosed neurodiversity a lot of water under the bridge! A diagnosis in the family can really start to challenge those narratives and not everyone is comfortable with this and particularly if it means looking at themselves and their own situation. Not sure if this is relevant in this instance but it could be a possible reason why your nieces mother is finding it so difficult to accept.

If you live in Sussex one organisation I would recommend is AMAZE https://amazesussex.org.uk/. They are a charity that supports children with disabilities and special educational needs and their parents. They have an advice line and run things like parent training and support groups. I sometimes attend the Dads group which meets once a month in a pub in Hove and I found it really helpful when my son was first diagnosed to meet people going through a similar situation and just have an opportunity to chat in an informal setting.

 

[Jackthelad]

A really interesting thread. With some great advice.
I agree with a lot that's been said about parents of Autistic children often having undiagnosed autism. It's not always the case, but it's very common. I also think a huge number of people are undiagnosed in general. The Conservative government have set us back years with regard to mental health and disability. Not to go on a tangent but it does piss me off that some Autistic people have to feel like they have to mask their behaviour for others. The stereotyping is awful as well. Autistic people tend to have loads of empathy but we are often told they are robotic and cold, which is utter bs.

 

[Solid at the back]

On it being in the family - I see it in my Dad, and I also have the same traits as my Son and Dad, I'd be astonished if we weren't diagnosed. How do you get assessed as an adult?

 

[Half Time Pies]

On it being in the family - I see it in my Dad, and I also have the same traits as my Son and Dad, I'd be astonished if we weren't diagnosed. How do you get assessed as an adult?

A trip to your GP would probably be the first step and get them to make a referral. Waiting lists in the NHS are quite long at the moment but you can through 'right to choose' find a qualified provider that does have availability and ask your GP to make a referral to them.

In the case of my sons and my assessments we ended up going privately, mainly because our GP was very poor, the waiting lists in our area were so long and we could afford it. With a private diagnosis you may however find that your GP and/ or other local organisations do not accept it.

Both my sons and my private assessments were carried out by well respected consultant psychiatrists who both also do work within the NHS as well as private work, however my GP at the time would still not accept our diagnosis and enter in to a shared care agreement, so we ended up changing to a GP that would.

I suppose if we moved and needed to change GP's we may find ourselves in the same situation again, but for now it works quite well. I think I am still on the NHS waiting list although I haven't heard anything for some time and its been at least a couple of years since our original GP made the referral!

 

[Solid at the back]

A trip to your GP would probably be the first step and get them to make a referral. Waiting lists in the NHS are quite long at the moment but you can through 'right to choose' find a qualified provider that does have availability and ask your GP to make a referral to them.

In the case of my sons and my assessments we ended up going privately, mainly because our GP was very poor, the waiting lists in our area were so long and we could afford it. With a private diagnosis you may however find that your GP and/ or other local organisations do not accept it.

Both my sons and my private assessments were carried out by well respected consultant psychiatrists who both also do work within the NHS as well as private work, however my GP at the time would still not accept our diagnosis and enter in to a shared care agreement, so we ended up changing to a GP that would.

I suppose if we moved and needed to change GP's we may find ourselves in the same situation again, but for now it works quite well. I think I am still on the NHS waiting list although I haven't heard anything for some time and its been at least a couple of years since our original GP made the referral!

Great, thanks.

We looked at a private diagnoses for my son a couple of years ago but decided against it after reading that NHS may not recognise it. Luckily we got him diagnosed a year ago at 3 and a half. Which is still very young to get a diagnoses.