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.

It's like a lot of things, there is a massive spectrum. My son was born at 36+6. He was premature. 22 hours later he would have been full term. He was quite poorly at first and was on cpap, drips, jaundice lights etc but a week later he was home and doing well. There were babies born at 24/25 weeks in that unit. Some didn't survive. Most have long term conditions like cerebral palsy. Many were in the hospital for months. But they were still premature like my son.

I honestly don't know the solution to this. I have 2.5 children with autism (1 is in the process of being assessed). None of them could have gone shopping with friends aged 12. My older 2 have just started doing it aged 14 and 16 but it's a nerve wracking experience for me still. Dh (also autistic) has struggled to hold down a job all his life. He is self employed now, doing his obsession for a living. Which is great for him but we have had to make massive cut backs because it doesn't pay well. There is a massive difference between your son and mine. And both our son's are very different to the girls on the football team.

I don't think there's much empathy on this thread for someone with a profoundly disabled child.

Is it OK to ask about how wide the spectrum is? My DM and DB are autistic, my DB is non-verbal but my DM has been able to live independently, have a family and do much if what she wants to with adaptations. The very difficult experience my parents had parenting my DB is a world away from what my grandparents experienced parenting my comparatively able DM.

It could be galling to hear about outwardly superficially appearing NT kids being diagnosed with ASD if your kid is profoundly autistic. This doesn't need to invalidate anyone.

Shan't!

Who made you head prefect?

In my, admittedly only 15 years, experience, autism is only an issue when I am feeling the friction of "everyone else". Or what I'm"supposed" to do.

Of course doctors pathologise it, that's how medicine works. They fix things that are wrong. For many autistic people, the only thing wrong with them is that they're not like the middle 80%..

You know what would be radical? Taking half of it out of the medical domain, in terms of care, solutions, diagnosis. Keep the doctors for the scripts, the comorbidities, if necessary, but hand the rest over to those who understand that different doesn't mean wrong, and that it would take very little universal change to have a huge impact on this group.

So expensive to try and make each person more... average.

Turn down the noise, the bright lights, the whatever, and see everyone become happier, more productive.

To add to what Monkey was saying, I think she meant that there is a need for coping strategies. An example from my life is that l am hard of hearing and wear two hearing aids. I have had a degree of deafness most of my life. I am good at lipreading so make sure l am in a position to see people's mouths in a noisy situation. Sometimes it is unavoidable to be in noisy places and l cannot expect everyone else to adapt to me. I am also aware that there is a big difference between my degree of deafness and that of someone who is profoundly deaf. The same with autism, which is why strategies and rules to help cope with unavoidable situations are so important.

Autism is now a massive diagnostic umbrella encompassing everything from cerebral palsy to what used to be called Asperger's syndrome and a seemingly similar diagnosis available in the US (not here) of hyperlexia. This was a change around a decade ago now. Maybe longer. There must have been good reason for it, but I think it was not universally celebrated. There is no single physiological test (like a scan or blood or DNA test) that you can do that covers all autism cases and excludes everyone else. It is diagnosed on the basis of symptom clusters and those symptoms are now very wide because it covers a massive spectrum. That means that your son is not merely autistic and there may not be other specific clinical labels that you can use to explain that he is wholly dependent on full-time care. Annoying for you. It may change again, but for now that is the diagnostic landscape.

There is a separate issue of pathologising personality traits. It definitely happens. Quirky doesn't automatically mean autistic. Clumsy doesn't automatically mean dyspraxia. And energetic or badly behaved doesn't automatically mean ADHD. Let them talk all they want. If they are going through CAMHS then they will find that their children are unlikely to be a priority. CAMHS faces huge (unprecedented) demand and has to sort the wheat from the chaff so they can focus their energies on children whose level of need is more akin to your son's.

Life skills you say? OK.

A**I go shopping on my own, drive and attend social events.

B**Tesco recently brought in a new checkout and I couldn’t understand where to put the basket. I ended up crawling on my hands and knees underneath it to try and figure out how it worked.

A**I have my own business that I’ve run successfully for 13 years but prior to that I was a senior manager at a finance firm.

B** I get so anxious sometimes that I vomit. This can happen with very little provocation - such as a close friend going on holiday overseas so won’t be around as usual (change sucks).

A**I have a mortgage and run my own home, and have done in various forms since I was 18. I am currently managing a large building project.

B**I get confused by door locks (other than bolts). I forget how to unlock the door and panic about being locked in so I won’t go anywhere if the door has to be locked. This caused problems for a recent CT scan.

A**I was a school governor for 5 years+ and was commended by the local authority on my work.

B**I practice conversations at home in my head and get subjects of conversation ready. I talk too fast and people think I’m nervous but actually I’m just trying to keep up with the thoughts in my head. I don’t like eye contact and I gesture manically while talking.

I’m a 47 yr old autistic woman who also has ADHD.

Most people see the A version of me - I’m often described as funny, confident, sociable.

If they saw the B version of me, the part I have had to fight my whole life to hide, they’d be utterly shocked. I struggle with basic things like eating or paying the bills on time but outwardly I have great life skills.

Autism means our brains are quite literally wired differently. Recent research is showing changes on MRI scans so hopefully in the future this will be the diagnosis route. I argued this vehemently rely on a thread the other day - diagnosis matters. Understanding why you can’t just “try harder” or manage simple stuff helps you feel like less of a useless, shit person.

I was diagnosed late. In my 40s - and only after my two DC were diagnosed. DS quite complex needs - 13 yrs old and still in nappies. With me for life. Doubt he will work. His twin sister not diagnosed until age 10 - but she has complex language difficulties that look like rudeness (but actually are a processing difficulty). She’s several years behind in language but no one picked it up until I pushed for a language assessment - because girls are missed. DD’s difficulties are quite marked but no one spotted it. She won’t go out on her own or even cross a road on her own. Or go into a shop with me outside. But I hope she will one day. I think she’ll work, but it will take time. She was missed at school until she was 10 yrs old when she was assessed and had a language age of 6 yrs. Shocking really but that’s the reality for lots of girls.

Tbh OP I would be unlikely to discuss my child’s problems with you in any detail over a big group lunch full of people I’d only just met so who
knows what these girls are actually experiencing!
children who are never going to be independent will
generally be diagnosed with learning disability so if you want people to know that he’s unlikely to be living independently that might be a more specific term to use

The OP isn't lessoning the validity of other people's ASD diagnoses. She is clearly concerned about autistic people who cannot advocate for themselves in any way.

As for people saying thier ASD children mask in school, again, the OP (if I'm right) seems to be referring to those children (like my own daughter) who do not have the cognitive abilities to even be able to mask their autism.

Mainstream media is has recently aired several documentaries surrounding ASD to make people more "aware". None of those even remotely mentioned those with "severe" autism. When people see and hear my nearly 8 year old (I assume what they percieve as) grunting, moaning, watching something wecan't see, making jerky movements etc they get uncomfortable or they stare. As in physically stop what they are doing and stare at her. She will probably always be cognitively emotionally and socially around 18months. Her autism is not the same as a the girls mentioned in the OP. They may be autistic. But it isn't the same.

@OctopusComplex

Shan't!

Who made you head prefect?

Grow up!

I was talking about the legal definition of a disability. If you meet the criteria for a diagnosis of autism you by defiant fit the definition of disabled.

Your opinion, or mine even, have no place. The law is very clear, as are the diagnostic criteria.

Turn down the noise, the bright lights, the whatever, and see everyone become happier, more productive.

A great example of you not having the first fucking clue.

@ForTheLoveOfSleep

The OP isn't lessoning the validity of other people's ASD diagnoses. She is clearly concerned about autistic people who cannot advocate for themselves in any way.

If OP concern is that then why has she made a thread about others?

The 12 year old shopping doesn't change her son's disability, or his care, in any way.

Of course YANBU to worry about your child and to do everything to protect their vulnerability. There is a major issue in that I don't know how you would would split those with greater needs and lesser needs as there would need to be a cut off. And then you would end up pitting life skills versus mental health, which would benefit no one. I wonder if the issue isn't the focal (majority?) who seem to be campaigning against therapies that would teach your son the life skills he needs?

I would assume it was just her personal example of how wide the specrum can be. I honestly don't think she was trying to say they are "less" autistic. Just differently so in the the amount of support they require with day to day life skills due to their autism.

I can’t really answer for the OP here though I could take a guess. Speaking for myself it’s because other parents in what’s ostensibly our support community are not only having a wildly different experience but also being very hostile, rude and minimising about our own experience.

Focussing on our own situation, just worrying about our own child, can be unbearably lonely, stressful and hopeless and it’s made harder because no one wants to hear, accept or validate our experience- only to argue that we are in the wrong.

Ah, I’m homophobic now.
Maybe I’m racist too. And misogynist. Even though none of those topics were even mentioned but no need to let that stop a good bit of sensationalism.

My post was aimed at the above

Whats with all the threads shitting on so-called high functioning autistic people lately?

Focussing on our own situation, just worrying about our own child, can be unbearably lonely, stressful and hopeless and it’s made harder because no one wants to hear, accept or validate our experience- only to argue that we are in the wrong.

OP is the one starting arguments here.

This is about the fact that they may well go on to lead a good solid life. I know these girls are doing well academically. They clearly have good friendships and are trusted by their parents to go shopping at the age of 12

More than likely unless there is huge input they won’t.

I was diagnosed in my late 50s with ADHD and my Dd suspects I am also autistic. Dd diagnosed with adhd and awaiting an assessment for autism.
I scored very highly on the online tests and can see that I could well be diagnosed with autism if I went to be assessed but given, even if I was diagnosed with autism tgere isn’t really anything anyone can do, there are no meds unlike ADHD I don’t see the point m
At 12 years old I was like these girls. I could go shopping with friends Etc

However the wheels came off a year later as things got harder and harder to keep up.

Regarding crossing the road there are the friends and family who I have walked in the street with who know what I am like with not waiting for the Green man and stepping out in-front of cars
Fortunately I live in London and traffic goes very slowly

If I am on my own and am not really thinking about my actions I don’t even bother with the crossing. I have been know to step off the kerb without looking.

How I haven’t been run over is a miracle

I understand exactly where you're coming from.

My ds is now a young adult. He has severe autism, learning disabilities and challenging behaviour. He's non verbal and will never live independently.

I struggle that so many kids are being diagnosed who have relatively few issues. Some parents seem shocked that being non verbal is a thing in autism- yet years ago this was the classic type.

I think the diagnostic criteria is too loose. I work with lots of students (uni aged) who have been diagnosed with ASD. Some have more obviouse difficults, but each year there are more and more that seem to have been diagnosed on the basis of being a bit shy or anxious or sensitive. I think normal personality traits are being pathologied. One student told me he believed he is autistic because he finds that when he talks to people he finds himself accidently adopting their accent or the way they talk, especially if he is around them for a long time. Apparently this is now an indication of autism. The realisty is, most people adapt their accent or way of speaking to whoever they're talking to. Another example - needing a lot of down time after socialising. This used to be called INTROVERSION! I know it is all a question of degree and how it effects daily life, but I think often if you look for things, you find them.

Sorry about the typos...

YANBU. I completely agree with you. There is no doubt it is fashionable now to say you have ADHD/ASD etc, and it trivialises those who suffer very badly with these issues.

Does my head in. I particularly notice this among middle class middle aged women - all longing to be diagnosed with (particularly) ADHD and then talk about it on Instgram.

How do you know there are more autistic people with no support needs than those who do have needs? It sounds odd. Was there a study done? How were the non-support people identified? Given that they don’t need any support, why and how were they diagnosed and what were the diagnostic criteria? Why were they looking to be diagnosed in the first place if they don’t need support? Was their (presumably non-necessary) assessment paid for by the NHS?

So - is it that may of you disagree with the diagnostic criteria, is that it? Or is it that the language is imprecise? I don't fully understand why it matters if more people are diagnosed as neurodiverse.

It isn't a zero-sum game but a matter of what level of support someone might need. It sounds like the OP's son is being supported in a range of ways but she might need more detailed language to characterise his profile.

As you are an autistic person married to another autistic person, with children and the ability to express your feelings on Mumsnet, I find it extraordinary that you feel it is like a gut punch when someone who has a child you will never be able to do any of those things and needs 24 hour support with basic self care feels it would be helpful to have a diagnosis that distinguishes their child’s needs from yours.

As a teacher I agree that the diagnosis is unhelpful as the way someone's autism actually manifests in their day to day life is so varied. When I worked as a supply teacher I would often walk into a class with a note that says 'child A has autism' and it told me absolutely nothing.

For example one day I had a note saying 2 children had autism. One of them could function and work and socialise the same as all the other children. The other had many differences or needed certain support I discovered throughout the day either through observation or themselves or another child telling me about it. But they both had the same label of 'autism'. I think there should be subcategories or diagnoses of some kind.

Also this may be controversial but I don't think diagnosis is always helpful. I worked with children in their first few years of school, where there were often children who were likely autistic but hadn't received a diagnosis yet. What we did was observe the child and speak with them and their parents in order to provide them with the support they needed. Having 'autistic' written on a piece of paper somewhere would have changed nothing, except maybe funding. So for your friends who have teenage children and likely will need very little in the way of support or adjustments, what is the point?