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.

Sorry meant to say...violent st home despite behaving immaculately (if very anxiously) at school

Talk about missing the point. But for full disclosure, since you asked, we cant leave his hair long as the sensation of it on his face distresses him, and putting it up (ponytail/man bun) also freaks him out. It has to be very short. And i did cut it once and it was more distressing for him as i was slower so he had someone touching his hair for longer and he wouldnt go back into the room we cut it in for weeks. Going to the hairdresser who works with us is the least distressing option. But still a shit show.

🙈 like we all have cancer but it's just not diagnosed, Jesus wept!

@MWBE I wasn't even asking about your daughter - you commented first

@waterrat we do expect more from kids - nursery, after school care, holiday clubs, more group work. My childhood had none of those things.

🙄 But generally, you don’t need to have other people’s autism broken down for you, because it’s not your business.

I agree with what you are saying.

No, I think people are just more understanding (in general). I have a relative, who was considered 'odd'. In fact, very intelligent, got unto uni, had a complete breakdown, moved back in with his mum, couldn't speak to anyone other than parents and siblings - not even close friends- managed a job with no human contact whatsoever, no friends or relationships, attempted suicide when his mum died, went into rehab and supported living and was only diagnosed with autism in his late 50s. (Biggest 'no shit Sherlock' ever.) 'Odd' people were just tucked away out of sight and ignored.

@SnackSizeRaisin I'm just coming back to your comment as it has really frustrated me. I am not lucky that my child was diagnosed at 5.

My son at the age of 5 couldn't speak. He couldn't use the toilet. He didn't go to sleep until 2am. He didn't know how to play, he would just throw his toys around and like them all up. He would hit me, kick me, bite me etc. I was told to go to self defence classes to learn how to protect myself. I couldn't take him anywhere, meltdowns were huge. He would scream at baby and toddler groups to the point where I would leave crying in front of other parents. Life was horrific then. I don't see us as lucky - i see it as well and truly obvious.

At the age of 15 he cannot cross a road by himself. He can't use a knife and fork - just uses fingers. He has no friends. Regularly draws pictures to say he wants to kill himself. This is also autism - as well as everyone else's version of it.

I have one of each, two DC, one with ‘more complex’ (worse) autism than the other one (for lack of proper wording).

I don’t think you’re being unreasonable and personally I’m worried as well. I’m really happy more people are getting diagnosed as it shows how high the neurodivergent percentage is in groups of people, but since taking away saying Asperger’s (which I massively agree with btw) and high/low functioning then it leaves you with such a huge spectrum to fall on. We could really do with something to indicate severity.

What I will say is my other child who’s “more able” doesn’t get any support at all from school etc so life is really hard for them! My “less able” DC gets every support available. They both have the same diagnosis.

@user1188 I totally agree with your first post. I think that talking about a spectrum is outdated. Maybe levels should be applied. E.g. Level 6 non-verbal, Level 5: Verbal, but speech mostly echolalia. Both these levels mean that autism of a severity that they can't be independent or work. (I have two like this). Down to Level 1 where these work, have families etc, but struggle socially. The term ASD is applied so loosely now that it's unfair to those who need help with all aspects of living. I have a friend in her 40s recently diagnosed who has a very senior job in government and writes a blog about her autism which is in complete contrast to my two who can't even cross a road safely.

Many conditions are like that though - my DD has narcolepsy. She is at Uni. She’s not allowed to drive, but she lives well with medication. Two of her friends from the support group at at opposite ends of the scale - one is flourishing on new meds. Even got her driving license back. As long as she remembers the meds her life is relatively unaffected. The other has cataplexy numerous times a day as well as serious EDS. She’s had to drop out of Uni, can’t go anywhere alone and her quality of life is very poor atm.

Even cancer patients are different.

Being concerned about limited help and support is entirely justified. Especially with the constant slashing of support services over the last few years.

thinking that should mean those less impacted in obvious ways should be diagnosed differently or not diagnosed at all isn’t justifiable imo.

I think I understand what you are saying. But...

DD was diagnosed with 'high-functioning' autism aged 7. Then it became ASD, PDA, ADHD and complex mental health needs. They are now nearly 15.

I have just held DD sobbing for an hour because they are planning to kill themselves because they simply cannot see how they can be a functioning adult. They had to leave mainstream school due to mental health issues - we are one of the many home schooling because there is no suitable provision.

Some days she 'seems' to be fine, and many, many people tell me that they would never have a clue DD has any additional needs. I bite my tongue and don't point out that that is because I spend 24 hours a day trying to create an environment where this is the case. And I am still failing.

There needs to be more support for us all - we need to look at the government who have created scarce resources, who are changing thresholds for diagnosis so that more kids get to crisis point before anyone notices or cares. The problem is not how big the spectrum is, but how little support there is for everyone.

Hi OP, this thread is fascinating to me because I have a daughter on the waiting list for an autism dx instigated by the school and the reason for this is because she has toileting problems, stims and finds school overwhelming.

On the other hand she is doing fine academically, she hit all her developmental milestones, is pretty much uniformly happy outside school, eats adventurously and well, happy with divergence from routine, interested in and proficient at relationships if a bit blunt, no masking, no meltdowns.

So I think she might be assessed as being on the spectrum but very high functioning.

And what I would say about the wide net of diagnoses is that we don't really have a way of managing children who don't completely conform because school has to be one size fits all and maybe this is what these moms were reflecting.

There is also the dynamic where so many borderline cases have diagnoses, and so many extra adaptations are being made for these children, that NT kids who are just struggling a bit threaten to be completely left behind.

E.g my NT daughter is not socially confident. Being NT, she was left to her own devices when she joined a new primary school. It’s been a rollercoaster and she has massively struggled. Two weeks later, a girl with minor SEN (dyslexia) joined, was given a full intro to the school, supported by buddies, and is now flourishing. It didn’t and doesn’t feel fair.

@MWBE I'm not saying it is. I'm saying I worry about those with autism who are vulnerable. It's not always going to be clear to see. If you met my son, he would shake your hand and introduce himself. He's so polite it's unreal. However yesterday he told me he didn't want to be alive anymore. It's invisible to others - but not always.

He's 15 and I have to hold his hand everywhere - it's getting pretty awkward as he's way taller than me and to others it might look strange. But if I don't he could run off or not realise we are by a busy road.

However no one would look at those football kids any different - just a group of girls having a good time shopping.

Which is my whole point of the post.

OP, I understand exactly what you are saying. I am amazed by the number of MN posters who state their child has SEN or is awaiting diagnosis. I worked in education with children with SEN and SpLD and know that the numbers don’t add up. It would mean that children with no additional needs would be in the minority, which clearly isn’t the case. ADHD became the new dyslexia, ASC are now the new ADHD.

@Pushmepullu yes, it is definitely starting to feel like children with no diagnosis are in the minority, and are being left behind.

100%! There really does and it's so frustrating. The clinician at our last cahms appointment told me if this was 10/15 years ago, it was all so different. But with financial cuts and more children they just can't cope .

Personally I think once you have a diagnosis, you should be then transferred over to some sort of support service. When we got our diagnosis, most things just stopped. It was like 'we know what's wrong now so we don't need to see you anymore'.

Now it's a battle to see anyone. I don't know if this is the case everywhere but in my area, those who are fighting for diagnosis and those that already have it and need extra support are all the same service. The same clinicians trying to do it all. Even the same phone number. There aren't any separate departments for different needs. It's so sad.....and frustrating!

I hear you OP. My son is autistic with significant delays and I'll be approached by mums who are convinced their child is autistic and point out the child talking with friends and playing. The autism they see is at home because child doesn't sleep well - and that's it.
I think its become one of those words a lot of parents just throw around now. Not all parents but quite a lot.

Your judgment on who is vulnerable is seriously flawed. Going shopping is not a gauge.

My adult daughter prefers this term as it describes her much better than ASD. She has a masters degree and is able to drive (automatic). The autism is a significant part of her but does not rule her whole life as it does with her older brother, who went to a special school, lives reasonably independently, will never be able to work and will never be able to drive. Although non-verbally intelligent, he functions at a primary school level to all intents and purposes. My daughter prefers the old Asperger's term as it differentiates her from her brother. As she is the person who has the condition, this is surely reasonable. ASD is too wide and general a term and particularly fails those at either end of the spectrum.

I get what your saying OP it would be great if there was the support for ever child requiring it but there is not. With so many and varying degrees of diagnosis the support becomes too thin for those at the most vulnerable end of the scale. The annoyance should be directed at the Government who do not give the funding for all to be supported. Same with asthma my daughter is a chronic asthmatic (often hospitalised could die) but so many are diagnosed & most they ever are is out of breath

This.
My Daughter is 16 she is House Captain - she has done her Bronze and Silver D of E. She had 2 GCSEs level 9 by 13. She doing a levels and another 12 I think GCSEs this year.
she has friends - liked minded girls who are similar and they avoid trouble and are very very rule bound and all have interesting hobbies eg bonsai collecting 😂or mini owls to an obsession.
again and again from the age of 2 we had issues - she can’t fail, she can’t be told off, she can’t get 9/10 - it’s trauma. Too much noise hands over ears and meltdown. She remembers everything everyone has ever said or done.

for years the school would not refer them - they don’t cause behaviour issues, they are academic, they are polite to staff and leaders - however it is called masking.

mine will go over and over the same exam question and markschemes looking where she lost a mark for hours. The meltdowns, the lack of social interactions - their group is very rule bound - they are not the in girls. One is anorexic, another harming - it presents very differently in girls than boys as all the research is on boys.

the school reluctantly referred mine only after I started and process and got a private referral - yep she is autistic and it’s a huge spectrum.
did she need a diagnosis - yes. Reading about her condition she is starting to except why she feels different.

and yes, autism in girls is massive - and in diagnosed.
I can’t remember the exact figure but I think in one of the top eating disorder clinics when assessed a 1/3 of the girls are autistic - so they need to be treated as such.

mine won’t go to the toilet during the school day due to the other pupils - literally 7 am until 4.30 pm without the toilet. Etc can’t leave the house without the right water bottle etc

I think years ago if someone was obviously autistic or at one end of the spectrum we simply didn’t see them - in a care home - removed from the family. Think of how many women went into mental hospitals after childbirth -

I go off track…

I do think in my daughters case for the first two years of high school she had little or no friends and no social interactions as such apart from the normal brownies etc and she learnt the social rules and then gravitated towards similar girls - all a bit academic and off beat. So they have friends. She also has high boundaries - she had a boy she liked and they were texting and then he did something as a ‘joke’ in front of her friends and it wasn’t very nice and she just went - ok, you’ve shown me your emotional intelligence is zero - game over. She’s very very rule bound and I don’t want to change that or persuade her otherwise. If someone is mean - she cuts them off.

Im just speaking for my daughter and her friends not judging anyone else etc or saying boys aren’t the same etc

I do think lock down played a massive part and perhaps because they were home for 12 months or so during those years - that’s had a huge impact too.

The child is probably masking?