To avoid my friends for a while. SN child and I’m jealous.

[DefConOne]

Really struggling seeing my friends DC leaving year 6. They are all doing so well with academic and sports achievements. All enjoying parties and leavers assemblies. My DC is at special school as has been unable to cope in mainstream due to her ASD. She isn’t happy about it.

I feel like a bitter, jealous cow but I can’t join in with the conversations and it is really painful. Luckily I have a few child free friends so I am trying to spend time with them.

Do I just suck it up and nod and smile while my friends chat about their DC, or just avoid them for a while?

I personally think "categories" of autism are unhelpful. The emphasis needs to be focused on the individual and the impact that their neurodevelopmental disorder has on them. Not what artificial category they fit in.

I support the move towards having a single clinical diagnosis of autism (or ASD or ASC whichever). Beyond that, all further description should relate specifically to the individual.

Learning difficulties may coexist with autism as can any other condition / disability / social or family circumstance.

Using categories or labels, like Asperger's or high / low functioning, leads to generalisations and assumptions which are at best unhelpful and at worst dangerous.

"High functioning" is not a diagnostic category any way. It has no clinical definition. Some people use it to mean IQ and others use it to refer to functioning in daily life.

As I said before, I understand why so many parents of children with learning difficulties / severe and complex needs / PMLD feel angry about the the rose tinted view of autsim created by the press / dramas/ blogs etc.

But it has a devastating impact on people like my DD too! People who on the surface look like they should be one of those successful, high functioning 'different not disabled' autistics.

The mismatch between people's expectations and the reality of what my DD can do, has almost destroyed her. And the fight to even get her needs recognised as a disability is relentless and soul destroying.

There are many, many people who have a diagnosis of Asperger's for whom that could be regarded as a disservice because their autism profoundly impacts their lives, but too many people expect them to be Sheldon.

I agree that there needs to be a much more realistic representation of the impact of autism in media and for professionals. But I don't want to see more divsions and categories. The adage “If you’ve met one person with autism, you’ve met one person with autism,” may be trite - but it is actually true - the focus should be on the individual.

I think the lack of categories and definition is down to us still knowing so little about these conditions. I do think having information is going to be more helpful in the long run. It's incredibly stressful as a parent to be told to wait and see, I wish someone could just tell me the outcome. I think there are some characteristics that could group individuals as to having similar traits for example, I have 2 children in the more severe end and I find that they are so different from each other and yet there are other children on YouTube that they are similar to. Far more research needs to be done. I also have a cousin who has been diagnosed with Asperger's and none of us knew until he was in his 20s. There are some people where this is far more debilitating than others, and I don't think it's wrong to say we are still in the stone ages when it comes to understanding this. The fact is that the definitions keep changing. As with any other condition, more research and understanding will only help. In a way, if you think about all the research that has gone in to cancer, we know that a benign tumour is not the same as malignant cancer that has metastasized. I really believe having another label for severe non-verbal autism will be the path forward in order for adequate research to be carried out successfully.

I think it’s important we do label severity and push for more services for those with more severe needs. That’s not to say that many kids, including NT and others can have severe needs too.

However there is a severity of autistic traits:
Severity of language difficulties - this is a HUGE difference. No one can argue with this surely.
Severity of ridgidity.
Severity of behavior. Some kids have to wear helmets because of head banging. That’s severe.
Severity of sensory issues. Some kids can’t even go into a shop.
Severity of IQ and learning issues.
Severity of motor skill issues.
Whether the child can be independent.

Some children with autism (previously Aspergers) are far less affected in these above areas, and many have no language delays at all, few motor skill issues and normal range IQ. Anxiety may be high however many kids, NT also suffer anxiety very high too, which should be treated and helped accordingly. However I think it’s time we let kids who have more autistic severity be helped with that more than others with less. It starts with acknowledging the difference.

I think it's more simple to see when children are young. Certainly, my DD1 who needed constant 1:1 supervision when she was young (escape risk, no sense of danger, ataxic, behavioural difficulties) was obviously different to other children. Now, she's 13. She looks, from a distance, like a regular child (when she isn't chanting or flapping), and she's just beginning to read sentences. But there's no denying that she needs special school. She will need support for the rest of her life, despite being verbal and mobile.

DD2 has ASD. For her, the main barriers to accessing life are her extreme shyness (an e.g. was that in very high temperatures, she wore her blazer at school, because she couldn't ask the teacher if she could remove it) and her anxiety. She also has very limited motivation and doesn't get 'encouraged' by other people - unless she sees the point in something, no amount of enthusiasm from someone else will prompt her to join in.

But, there are children who can't do anything unsupported and the need is relentless.

I don't think it's helpful to debate the nuances, as it just leads to misunderstanding and upset, tbh.

I support the move towards having a single clinical diagnosis of autism (or ASD or ASC whichever). Beyond that, all further description should relate specifically to the individual. I disagree with this. As services and support are geared towards a diagnosis. Also it means that advocates, and the media, also lump a very desperate group together and it has ended up with as now, the most severe are being ignored and neglected.

In most other diagnosis, a degree of severity is very very useful. I’ve had zero SLT for my non verbal DS for example, even from ASD education and health services, partly because they can get away with it because others with ASD have no SLT needs. Even in mental health those with severe depression are acknowledged to have higher needs, for example, and get more services accordingly.

Disperate not desperate! Freudian slip...

Kangaroo1970 I agree with much of what you have written.

Assessment should be ongoing and identify the severity of need throughout a child's life. But i disagree that there needs to be a "label" attached to this. The effort spent trying to come up with diagnostic criteria that can be agreed is worthless.

We already have all the words needed to describe any child with severe learning difficulties and autism. We also have all the words to describe what impact these needs have on the child.

And each child should be funded and supported in accordance with those needs, not on the basis of a label.

Kangaroo1970 it is possible to develop more effective ways of identifying and communicating severity of need but that doesn't require a diagnosis beyond autism and any other coexisting conditions

I think labels are often the only powerful tool we have to get services. Someone without a label of cancer or a label of depression will not get access to help and support.

It is a medical diagnosis so it carries weight.

When that is diluted through too broad a category that denies those who need it the services they need and also the lack of a voice to advocate for it.

I find myself being drowned out trying to advocate at times for my more severe DS by those who don’t even want services just recognition. I’ll set up say, a campaign group to get more SLT and others who’s kid needs no SLT will not join in and may even undermine me.

It is extremely difficult to fight and get good services for an individuals needs. Look at those poor families who have a rare disorder in their child, they can be locked out of support groups and the medical/educational etc is much harder for there is neither a body of expert knowledge, or personal experiences to help.

And there is a specific clear case here in autism.

Non verbal, low IQ, lack of independence is so, so far from someone who has this it is detrimental to have under one umbrella.

Have you got a local SEN community? Must be quite isolating to be mainly friends with people who dont have experience of this. There are online communities too. Theres a SEN advice and support group on facebook which is fairly active and really positive.

And each child should be funded and supported in accordance with those needs, not on the basis of a label.

But this isn't how it works in reality. Labels are needed for priority and funding to be allocated, otherwise we are ignored. I gave an example of a SN playgroup, and I cannot attend because we are too severe. I would like to find a support group but again, it's hard to find one because of a lack of labels (and I don't want to feel the shame that I felt last time by just showing up). We wouldn't accept a lack of diagnostic information for any other physical illness, so why is it ok for this?
Its fine that people with different needs are getting support but people with more severe needs shouldn't be sidelined in to non existence.

We wouldn't accept a lack of diagnostic information for any other physical illness, so why is it ok for this?

Firstly, it is not a physical illness it is a neurodevelopmental disorder / difference / condition.

Unless I have misunderstood, your child has a diagnosis of autism and learning difficulties, so, they do have diagnosed conditions.

You should indeed get further diagnostic information - but that is not the same as a further differential diagnosis.

I think the one thing most of us can agree with us that the media's portrayal of "Autism " isn't very helpful,I personally think that "Autism"as a general term is too broad it doesn't take into account individuals and how it affects them ,I agree you have met one person with autism means you have met one person autism it's an umbrella term but it's so complex .

Firstly, it is not a physical illness it is a neurodevelopmental disorder / difference / condition.

It is the manifestation of something that has physically happened in the brain that science does not completely understand yet.

Unless I have misunderstood, your child has a diagnosis of autism and learning difficulties, so, they do have diagnosed conditions.

You should indeed get further diagnostic information - but that is not the same as a further differential diagnosis.

Why does it matter if they receive a differential diagnosis? Individuals with low IQ are diagnosed with Intellectual Disability. And while one off appointments with speech therapy (amounting to about 6 in total) may be ok with individuals with less severe needs, it is NOT OK for non verbal individuals. There should not be a 1 size fits all approach to the different severity levels of autism and if different labels accomplish this, then that's what I advocate.

Sadly, I don't think SLT is denied because 'most other kids with ASD don't need it'. It's denied because to benefit from SLT you have to be able to engage with the therapist. DD1 has S&L difficulties. She got SLT once she could engage with the therapy, for cued articulation to develop her speech sounds. As soon as she was able to deliver a range of sounds, she was discharged, even though she still says many words with the wrong sounds now. She is unable to express herself to answer direct questions, but can do so in free speech, so doesn't qualify for SLT.

Sadly, I don't think SLT is denied because 'most other kids with ASD don't need it'. It's denied because to benefit from SLT you have to be able to engage with the therapist. DD1 has S&L difficulties. She got SLT once she could engage with the therapy, for cued articulation to develop her speech sounds. As soon as she was able to deliver a range of sounds, she was discharged, even though she still says many words with the wrong sounds now. She is unable to express herself to answer direct questions, but can do so in free speech, so doesn't qualify for SLT.

None of this makes sense to me as the perspective of an American, because I have seen people diagnosed in the US much younger and depending on severity, they are put through multiple hours of therapy every week. Where we used to live down south in England, no one would even get referred to speech therapy until the age of 3 because other kids supposedly just "grow out of it" by then, but they were ignoring all the other diagnostic criteria for severe autism.

American provision is very different to UK provision for ASD.

American provision is very different to UK provision for ASD.

I totally see that but I don't think it's right to treat individuals with severe non-verbal autism as the same as individuals with less severe needs, which is basically what is happening when adequate provision isn't allocated to meet severe needs but they can get away with still saying they provide services for generalised "autism". This is why I think another label for severe individuals would be helpful because then local authorities would be challenged to address those needs adequately.

I don't think it's right to treat individuals with severe non-verbal autism as the same as individuals with less severe needs, which is basically what is happening when adequate provision isn't allocated to meet severe needs but they can get away with still saying they provide services for generalised "autism". This is why I think another label for severe individuals would be helpful because then local authorities would be challenged to address those needs adequately.

I completely agree with this. I don’t mind what it’s called. However a proper diagnostic label will give this more weight. There could also be more focused and effective advocacy.

I am he same with my NT child. It’s a bloody nightmare from readiig schemes to party invitations to part time jobs internships.
It’s not you. It’s wanky ideas of parenting.
I work with SEN children. Like everyone they are all different and being the model for a special needs campaign and getting a job against mainstream applicants both have merits and financial rewards.