Special needs parents - am I unreasonable to think this way?

[user1188]

You can tell me if I am.

Background - my son is 15. Diagnosed with autism when he was 5. He has an EHCP, goes to a specialist secondary school where he gets transport every day. Gets DLA - HRC, LRM. Not able to do anything independently - never been anywhere alone. Never even been to a friends house without me there.

Im hoping he will be able to work when he's older however I doubt he will ever be able to drive or live independently. Im not putting him down here, Im just being realistic for the purpose of this post.

There are a lot of children in the same position my son and this post relates to all, not just him.

I also have a daughter who does not have any additional needs and she plays for a local football team. The mums of the football team recently went out for lunch while the girls went shopping in our local shopping centre. There were 11 of us in total. Apart form 1 mum (my best friend) I barely know the others other than saying hi etc at the matches.

So we are all sat at a table in the restaurant and the talk turns to autism. 4 out of 11 of these mums thought their daughters (who play football) were on the autistic spectrum. 3 of these were on the waiting list for cahms and 1 of these just beginning their journeys. Another mum was trying to get her son diagnosed while another mum thought her son had adhd. 1 of these girls already had a diagnosis.

This meant that including myself, 8 out of 11 parents either have or could potentially have a child with additional needs.

So I began asking them why they think their child has autism/adhd. The majority of answers were they just felt something was 'not quite right' with their child. They then mainly spoke about lack of support from school or the waiting times to get appointments.

Please be aware that I am not shaming these parents. I don't know them well enough to make any judgments. I am not saying that these kids are not autistic or do not have adhd.

But what I will say - 4 of these kids who are possibly on the spectrum were currently shopping with all their friends. They are social, they have friendships, they are independent, they can keep themselves safe. These girls are 12. My son at the age of 15 can not do anything of these things. Yet he would have exactly the same diagnosis as these girls.

I know autism is a huge huge spectrum - I get it completely. But I worry for my son and others like him - the more vulnerable ones. If autism becomes such a common thing to have - what about the most vulnerable? If Paul cannot live a normal life yet Adam, Jane, Julie and Pete can - will Paul end up with a lack of support because 'everyone has autism so it's nothing'

I may have worded this all wrong but after a premed consultation this morning with my sons teachers, we got on the subject and they also share my worries.

This is a really interesting topic. As a SENCO in primary, I find people are always surprised when children who internalise their Autism are diagnosed and am really pleased to see people develop their understanding further which will support these children that need it. That can only be a good thing as the less children who then have a mental health crisis in their teen years the better.

However, I understand entirely what you mean. And I think as we develop our understanding of how Autism can present itself, we need to be continually reminded that the label does not describe the person and each individual needs should be considered individually.

This area is constantly developing, as we have seen over the last 10 years. It is difficult as having a diagnosis of Aspergers or HFA can also be damaging as people expect you to be able to manage but that isn't always the case. I am not sure what the answer is.

Our medical and social care and benefits system are all based on perceived levels of need. Our whole disability policy and system is predicated on the 'neediest' people getting the most support. There's all kinds of problems with this system, not least that it's disempowering to focus more on what you can't do than what you can do.

However it does mean that it is likely to be the people with the highest level of need as a result of autism or other diagnoses that get the support. Diagnoses of lower levels of need may push up waiting times but aren't likely to change on-the-ground support.

To get a diagnosis of autism in England currently, you need to show a detrimental effect on day to day life. That doesn't necessarily mean not being able to work.

There will always be a 'hierarchy' of disability. Even disabled people hierarchise themselves, it's a natural tendency. But honestly I think the services will continue to be reserved for those with the highest level of need and so it's unlikely to directly impact your child.

NB my sister has the developmental age of a 15mo. She's not autistic but she's non-verbal and very vulnerable. She lives in supported living so as independently as she can (1:1 care). She can't work but she's happy. No-one's ever tried to take away her services/funding. I think the system does work for the 'neediest' but it doesn't necessarily work for that middle ground.

I completely hear what you are saying.

I have an SEN DD (physical and mental but not autism) who will never be independent and it’s drained me of every resource over the last 19 years. She never goes anywhere without me, has left SEN school and has no friends.
When she moved from DLA to PIP a friend contacted me complaining that her son of the same age didn’t qualify for PIP for his slightly wonky knee. I see him out everywhere with friends, great social life, college, job etc, been independent since primary school.
People who don’t know, don’t know.

Best wishes to you & your son xx

I fully appreciate what your saying. On one hand I think it's a good thing that it's easier to get a diagnosis and support for individual children to reach their potential in schooling etc. and I think it helps massively to destigmatize autism. However you are right to worry that the current support is already insufficient and provision will be spread even more thinly with an increase in diagnosis. I think the terminology can be difficult as well as it lumps all those with ASD together, and doesn't relate to specific difficulties individuals may have. It's hard to feel seen and heard when autism is largely represented by a certain group of people with ASD and doesn't fairly represent the whole spectrum. Children with autism and their families can feel invisible enough as it is.

I have 2 sons who are autistic. Very different profiles.

Eldest is in mainstream school. Can travel independently once travel trained, can use money, has formed some friendships etc. He will likely go to Uni with some support and go on to live independently and work.

Youngest is waiting for a place at speaking school. Academically years behind his peers. Still in nappies at aged 9. It’s less clear at this point what his future might look like.

When speaking with professionals and others working with or caring for them, I need something to give them a snapshot picture. I’m not carrying around their multi page assessment reports (which for my eldest is now years old so less relevant anyway!). I need something easy to understand but specific.

Just saying ‘x is autistic’ will mean something different to everyone that hears it based on their own prior knowledge and assumptions of autism. So I have to make it clearer and specific to my children.

For the eldest, where needed, he prefers to say/use ‘autistic with some support needs’.

For my youngest I say ‘autistic with moderate to complex support needs, including personal care’.

This then can lead to more detailed discussions of what specific support is required depending on the circumstances.

For the average joe on the street who really isn’t entitled to know ANYTHING about my children, but nevertheless may ask or give ‘the look’ if they are struggling, for my youngest if pushed I usually say he has additional needs or he’s autistic. I don’t say anything for my eldest because it’s up to him what he wishes to disclose about himself.

My m-I-l has a lot of experience of ASD, both as a parent and in her professional capacity. When I told her we were waiting for an assessment it was very obvious she thought there was no way my daughter had autism. Then I told her more and more details about my daughters behaviours since she was a baby; things we’d thought were just her little oddities At the end of an hour long chat she was pretty convinced we were right to seek a diagnosis.

This was her grandmother. Someone she saw and stayed with on a regular basis. It may be that the sleep problems are all they’ve voiced to you but I’d like to bet there’s a lot more to it than that.

Ds is 13 he is in mainstream school but with full time 1-1 massive care needs and unlikely to ever live independently.

that doesn’t mean those who have less care needs are less vulnerable - indeed many will become very vulnerable due to their independence.

I think there is an argument for things to be based on level of care needs but only if that is a fluid thing throughout their life as needs do change

This is what happens when they get rid of the Aspergers diagnosis and lump everyone in together under ASD. The spectrum is so wide that no one knows what it means, so it means nothing. But lots of people argued for it.

I thought it was a disaster waiting to happen - it has now allowed them to make it really hard to get assessed with ASD as the criteria are ridiculous and none of them are even anything to do with ASD. Basically you have to have completely disengaged with school and your life be basically falling apart, - so my son who is very bright and mostly well behaved would not have been able to get an assessment (he was diagnosed 7 years ago).

So I don't think you have to worry too much about the more able kids getting a diagnosis any more :-(

https://www.theguardian.com/society/2023/mar/26/children-put-at-risk-as-nhs-autism-assessments-are-cut-back

YABU. Surely you know that autism presents differently in females and males,

YANBU, I think one day it will be realised that autism is just one symptom of a range of conditions rather than a condition itself, so it will be split up. But the split will be based on the whole person and their other symptoms too, symptoms which are currently thought of as ‘comorbid conditions ’ as though it is coincidental they have that selection. I also think there will be a lot of resistance to this from the online “Autism Community”.

I completely agree. It's a shame Asperger's was rolled into autism when IMO we'd be better served by having more 'categories' of diagnosis, not just lumping everybody under one condition.

I understand what you are trying to say OP and I agree with you. It’s difficult to articulate properly how I feel about this but my 18 month old is delayed in hitting his milestones. I didn’t have any concerns at all as a first time mum as he seems happy, sociable and he’s just a bit slower than some of his peers to walk, talk, point etc. What has shocked me is that the HV has pointed out that not hitting these milestones on time can be an indicator of autism and have said they can put him on a path for a referral once he’s two if there is not enough improvement.

I have a friend who has a completely non verbal autistic 5 year old where it is incredibly obvious he is autistic and the daily struggles she faces with him is heartbreaking. I cannot bring myself to tell her that the HV has suggested my DS could also be autistic as it just feels wrong. It’s very obvious that our children will have very different outcomes in life and it just doesn’t feel right that they could have the same diagnosis.

I think I understand what you mean. You feel it's important to differentiate the degree to which it affects lives, a sort of 'rating' system? I guess informally we use words such as profound autism, high functioning etc. I guess my question is who do you want to differentiate? If it's the soccer mums I'd guess by saying your son attends a special school is a big clue to how 'profoundly' he is affected. Someone else might go to a mainstream school but has a TA in every class, another might manage reasonably well, have friends, will pass some GCSEs...but is crippled in other ways by anxiety and depression and can't ever 'get a girlfriend'.
An EHCP goes some way with children as doesntitlement to for example PIP. I think on the whole terms such as high functioning or profound is enough of an indicator. I dare say there are plenty of people who are registered blind who can actually see....just badly! I do get where you're coming from though and I can sort of relate to how you might be feeling in that particular social situation...gritting your teeth and wanting to shout 'Autism, autism....I'll show you bloody autism'....
I'm unsure why eg Aspergers was 'dropped'. I think that defined well a subtype. I also like the term cognitively disabled. From a functional point of view someone profoundly autistic and cognitively disabled could have very similar functions needs.
Labels are an odd phenomenon. We love and hate them. You're suggesting you want a label that says more than Autistic, yet you probably don't want that to be the definition of your son. I guess the best answer is awareness and education, which starts off with these very conversations with the soccer mums.

@Violinist64 - normally I'd say your daughter should use whatever dx makes her comfortable, but I've been gradually persuading my son to drop it for a very specific reason.

During WW2, Dr Asperger would look at all the children perceived as being autistic. Those who had "no value" were sent to the gas chambers.

Those who could be useful were "Asperger's kids" and saved.

Eventually I just explained it to my son, and suddenly he had less issue with identifying as autistic. Which, he is. When he was first dx his neighbour described herself as Aspie and he liked that.

One of my DDs has sleep problems - and by that we mean that without melatonin she won’t sleep til midnight and she’ll throw things some days, she won’t sleep without an adult there all night (won’t even get into bed), will be too tired to learn at school the next day (so misses quite a bit of school) or regulate her emotions. Regularly wakes in the night to get me and hold my arm so I can’t escape again.

sleep problems aren’t exactly trivial and it’s not her only issue just the one that most obviously destroys us as we are so frequently running on empty.

@teacakie You cannot compare a child who cannot even cross a road independently at the age of 15 to a child that can be left to go shopping without adult supervision.

Yes, these 12 year old can still be vulnerable! But there's also vulnerable in terms of keeping themselves safe and knowing to look both ways before crossing a road. Knowing not to get into a strangers car. I'd like to think that the 12 year olds know NOT to do this if they are out and about.

My issue with trying to narrow diagnosis into smaller boxes is that too many will slip through there because they don’t fit into those boxes. Many autistic people have very spikey profiles so can’t be boxed.

you could have two people with very similar levels of care needs but who present in completely different ways.

I agree with you. I don’t think many autistic girls enjoy sports. I know some do but it’s highly unlikely that there would be so many autistic girls playing football. I was absolutely terrified of PE. It was all I thought about and I’d be so scared I’d wet myself. I did have a best friend who I went shopping with though.

Most people have autistic traits. It reminds me a bit of when adults would say “Everyone’s shy at first” when starting a new school or whatever, and yes many people probably are but did they shake, become mute and watch as everyone else lost their shyness and made friends while they got left on their own? I suppose those shy people are now autistic🙄.

My DS isn’t severely autistic but he’s diagnosed with ASD with quite severe communication difficulties.

@WilmaFlintstone1 I also say “I’m autistic” because I don’t feel I have anything wrong as such but that I’m in the wrong environment. No one really cares or notices and I was diagnosed with Asperger’s and prefer that label but “I’m an aspie” sounds silly!

@JudgeRudy - well now you know.

Oh, and it's not a fecking label, it's a diagnosis.

Labels are given to inanimate objects. Or to humans if we're being unpleasant.

A Diagnosis is given by a doctor in order to better understand a person, and what adjustments might help said person with their everyday living and health needs.

YANBU. The desire for a label for anything that veers even slightly from neuro typical is very strong now. It’s almost become trendy. I’m not belittling anyone on the spectrum, but I do think we are in danger of over diagnosing personality quirks just to join the ‘club’. This is clearly not helpful for anyone.

But I worry for my son and others like him - the more vulnerable ones. If autism becomes such a common thing to have - what about the most vulnerable? If Paul cannot live a normal life yet Adam, Jane, Julie and Pete can - will Paul end up with a lack of support because 'everyone has autism so it's nothing'

I don't think so (or at least hope not) @user1188 . If it's anything like care in other sectors, authorities won't go on a diagnosis when choosing what help to give people. They judge based on what someone needs to funtion etc.

They can live a relatively normal life.... At 12. So did my DD, in fact until she was 15. She had friends (that I made for her or via sports / social clubs), she'd go shopping, she'd engage in social activities.

And then the mask slipped, total autistic burnout (it turns out, she wasn't dx til later), didn't leave her room for months, depression and self harm.

Less than a year later and she's homeschooling rather than at grammer school, massively reduced her GCSE load (9 subjects to 3) and well medicated. Her personality has completely changed because she can be honest now. No one had ever raised a single concern or query about ASD.

Girls can mask exceedingly well!

A Diagnosis is given by a doctor in order to better understand a person, and what adjustments might help said person with their everyday living and health needs.

But when the range is so wide, how much does a diagnosis of autism help fulfil this purpose?

It's not a label. It's a diagnosis. Would you call physical disabilities labels too?