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'm not trying to compete but I was hurt by gingerbreadsprinkle's comment about comparing non-verbal autism to Asperger's, a full blown hemorrhage with urgent blood transfusion needed is the same as a paper cut.

I suggest you get some perspective. Your daughter doesn't have Asperger's first off. Secondly, I'm talking about people who are socially awkward and find themselves similar to Sheldon from Big Bang Theory and saying they are the same and can therefore speak for individuals with severe non-verbal autism. They can't. They shouldn't even be in the same bracket. I can't take my children who are non-verbal to a function that caters to Asperger's children. You can't say that an individual with some sensory and social issues is the same as an individual who smears poo on the walls, bites, harms himself, and can't even say "Hello". Don't minimise the struggle of others and don't force us all to be looked at the same. Some individuals need intense therapy and will need to be cared for until they die, others will go on to be independent. It is what it is. I wouldn't try to tell a mum who's kid has cancer that I have it worse when my child has the chicken pox. People need to stop with that. We all have issues but some have more. Simple as that. Sorry if that's not politically correct to say, it's the truth. And requesting a separate label is nothing to apologise for, our kids are nothing alike.

By the way these labels are not static and I highly suspect that new labels will be created to further separate individuals in the future. As someone dealing with the severe end of the spectrum through my children I am clearly within my right to say the labels aren't working and will probably be adjusted again.

I remember when it first seemed likely that DT2 would be diagnosed with ASD and I was doing some research - I was absolutely staggered at the percentage of people with ASD who have an IQ below 70, and who can’t live independently. I thought it was really rare and that most with ASD were of average IQ or higher. You realise how much crap you take in from the media subconsciously.

Frankly i struggle to cope without the respite of school.

I am honestly terrified that the boys won’t get a suitable school placement and I’ll have to homeschool them. I genuinely couldn’t do it. The boys started nursery two mornings a week in January and when they can’t go because of illness or whatever, I can barely get through the week. I’m just running on empty.

I did start going to a toddler group at a local specialist school but I found it really hard. I’ve had to take someone with me each time as I can’t wrangle both twins on my own, but if I’m totally honest I just found it heartbreaking. Being non verbal and stimming constantly at 2 or 3 is so different from being that way at 5 or 6, and seeing their (likely) future broke me. I try not to think too far ahead because it’s just too sad.

Don't minimise the struggle of others and don't force us all to be looked at the same.

Is that to me gingerbreadsprinkle? Because I don't believe I have minimised anyone's struggle nor have I suggested teating everyone the same

Some individuals need intense therapy and will need to be cared for until they die, others will go on to be independent.

Of course.

I was simply pointing out, that there are autstic people who are cognitively "able" who will also need to be cared for until they die.

I understand why you feel so frustrated that the portayal of autism in press etc. does not reflect your family's experience and I hear how angry you feel about the way some people speak about autism. I have not and would not challenge your view and your experiences.

I haven't said any of the things you are angry about. I just pointed out that that "IQ" alone isn't a simple indicator of severity of need.

I was simply pointing out, that there are autstic people who are cognitively "able" who will also need to be cared for until they die.

I think we're agreeing, but just talking about different subjects. My frustration is that there are some people with high functioning (Asperger's like) autism who criticise and attack families with severe autism who have to try different therapies like ABA. I don't doubt that there's struggle for individuals who have high IQs and a higher functioning capability to get along with society in general but it's not fair imo for them to put down other families or basically act like they do not exist. It's sad when people who have children on the severe side are excluded from autism support groups or functions because they are too severe. That's why I think the labels need to be re-evaluated and higher functioning individuals should not be allowed to "claim" the autism label completely as not being a disability or they need a new distinction, or individuals with more severe autism need a new distinction. I have seen some discussion by higher functioning individuals who try to control the whole narrative by saying what is offensive or not, but they don't speak for us. ABA is not offensive. Saying my son is an individual WITH autism is not offensive. Trying to speak for us when you're not in the same boat as us IS offensive. That's just my personal frustration with the current dialogue around autism.

I think we're agreeing, but just talking about different subjects.

I think so too

I felt like this when all my sons school friends parents were talking about how well their kids did in their GCSEs and their plans for the future.
My son couldn't sit his and is t able to make plans for the future

I agree with what you are saying gingerbread and for that reason I stay away from autism " support groups" on Facebook people with higher functioning individuals with autism trying to deny my child is disabled because they don't feel that autism is a disability for them which is fair enough but you can't say that it isn't a disability for everyone ,and than also shouting down parents of severely autistic children because as they are not autistic themselves they can't possibly know what it's like to be autistic ,which is very true but by the same token they have no idea what it's like to be the parent of a severely autistic child if they are not one .

people with higher functioning individuals with autism trying to deny my child is disabled because they don't feel that autism is a disability for them which is fair enough but you can't say that it isn't a disability for everyone

And its not just those groups x2boys. I have just spent 2 years battling with social care to get my dd accepted by the children with disabilities team! Her asd is a barrier to her accessing almost every aspect of life.

I can well imagine @MrsDimmond a friend of mine ,son has autism ,his iq is just over the threshold ,to be given a learning disabilities diagnosis but his needs are quite complex which every one agrees ,finding the right educationl setting for him is difficult .

I just want to send a hug to you all.

I taught severely autistic children in a special school for many years, and knew some wonderful children and some incredible parents.
I was always so aware that I was there by choice, and could send the children home at 3:15, have holidays, and look forward to my own empty nest and a retirement when I could do what I liked (which is the point I'm at now). All the parents I worked with, and those of you here - you have my great respect and empathy.

I absolutely understand your need to have somewhere to express your feelings. Putting a brave face on things can be exhausting. I felt priveleged that many of the parents I worked with were able to let their guard down with me, have a cry or a rant, and know that they wouldn't be judged for it. It saddens me when people don't respect that everyone needs a safety valve sometimes.

Anyway - sorry for the threadjack. Flowers to you all xx

My newish HV (otherwise a good egg) tried to cheer me up by telling me how most autistic people have really special gifts etc. It really helped the next time I was driven to tears because of DS2's destructive tendencies, let me tell you.

It felt almost as good as MIL who barely tolerates him sharing "share this if you love someone with Autism" shite on FB.

I told my mum I was thinking of some designs for a tatt, she was veeeery disappointed I didn't want that goddamn rainbow jigsaw piece on me forever. I mean, it's not enough that ASD means I could be looking after him til the day I die, I should ink it on me too? I can't even ask my son how that would make him feel, it is his condition after all!

My BFF trained to work with adults with SEN and did so for years. She's the only person other than DH who lets me rant at her over a pint without acting as though I'm saying I hate DS2.

That's shockingly bad of the Health visitor but sadly doesn't surprise me ,another friend of mine was told by her Gp ,her child would grow out of their sutism

autism*

Totally agree that aspergers syndrome and autism should be separate. I find if I say my 13 year old has autism then people try to tell me that he can't have because he isn't like their niece's cousin's hairdresser's nephew who has "proper autism". In the same breath they are telling me that my 5 year old who licks hub caps and needs to be on reins when out will be amazing at playing the piano just like their auntie's postman's friend's cousin.

it's a nice thing that so many campaigns are promoting positive images of people with hidden disabilities and it is important to the self image of higher functioning autistic people who've grown up feeling weird and wrong that they have the chance to do this but nobody should be shutting anyone else's perspective down as not valid or closing down areas of the debate such as why so many struggle to find jobs -

I hadn't realised how low the percentage of autistic adults working is, I was shocked to read on NAS that it's 32 percent in some kind of paid work and that this compares unfavourably to the percentage of disabled people working.

www.autism.org.uk/get-involved/media-centre/news/2016-10-27-employment-gap.aspx

I despise the 'high functioning'/Asperger's label. My son has a diagnosis of both, but he also has PDA, ADHD and OCD. He's fine academically, hence the stupid labels, but he is very impaired. He is a nightmare to live with and we are researching residential schools as he is unable to live with us.

But Dozy a lot of people with autism will not be able to work because they also have significant learning disabilities , this is why it's so.important to remember that autism is a spectrum and affects everyone differently and not just focus on one end of the spectrum it's not helpful to anyone

True, this is a debate and an understanding that we are at the start of. The underfunding of services seems like a huge problem to me in people accessing relevant support.

This resonates so much. I find it so hard listening to my friends tell of children doing piano exams and winning prizes. So far removed. But my little boy is a delight. He's just on a different path

I also don't think all the autism awareness in the media etc helps because it tends to focus on very high functioning individuals, in a look what people with autism can achieve kind of way whilst ignoring the fact ,that it is a massive spectrum and those individuals at the other end of the spectrum may not ever even be able to speak.

And that so called awareness ignores the fact that not every person with "high functioning" autism can do those things either. Some people (including some posters on this thread) seem to think that Aspergers is just autism-lite, Sheldon Cooper, being very intelligent and articulate and quirky. That only people with "real severe autism" are disabled and the rest of us are all quirky geniuses who all go on to live independently, go to university, have jobs and relationships. Yeah, I wish.

The key word is SOME, some people with Aspergers can do that. Meanwhile the rest of us are hiding in our rooms and most people don't even know we exist.
And to the person who equated Aspergers to a paper cut, you can fuck right off with that bullshit.
Why do autism parents do that? Why do you feel the need to minimise other autistic people's struggles just because we have the audacity to not have a learning disability?

And for the record, yes, I'm "high functioning". But in the real world that doesn't mean a whole lot. I have no life outside of my own four walls. I'm dependant on my family, have no job, no life, no nothing. But hey, i can write this and form an argument, I'm just the quirky high functioning kind of autistic, right? 😥😡

Because you're right, it is a massive spectrum. And I am so sick of self diagnosed adults on one hand lecturing me online about "being grateful for the gifts of autism" and autism parents on the other hand lecturing me, insistent that all high functioning people can do this, that and the other.
And given that you recognise it's such a huge spectrum I don't know why you persist in the myth that its mildly affected high functioning people at one end, and the "really severely autistic and disabled" people at the other. Like you think all autistic people fit neatly into those two little categories.

But Dozy a lot of people with autism will not be able to work because they also have significant learning disabilities

And lots of autistic people who don't have an intellectual impairment are unable to work, because of the anxiety that's such a common comorbid with Aspergers. Along with other reasons such as people being unwilling to even consider making reasonable adjustments because in their eyes "you don't look disabled."
People don't seem to understand that having a normal IQ doesn't prevent a person from having difficulties processing language and need help understanding things. People generally speaking don't have a lot of patience, partly because i think so many people buy into the myth that high functioning autism means you aren't disabled at all.

Not to mention the fact that in some areas (like mine) the only employment support available is for adults with learning disabilities.
To put it into context, at an Aspergers group i once attended there were three people (out of fifteen) who were employed. And i don't think it's a coincidence that those three were diagnosed late as adults.

Some people (including some posters on this thread) seem to think that Aspergers is just autism-lite, Sheldon Cooper, being very intelligent and articulate and quirky. That only people with "real severe autism" are disabled and the rest of us are all quirky geniuses who all go on to live independently, go to university, have jobs and relationships. Yeah, I wish.

I certainly don’t think that, I hope others here don’t either. I think the frustration being discussed here is being lectured on how ASD is not a disability by people for whom it’s not a disability.

If ASD negatively impacts you and prevents you from living your life as you’d choose to live it, then it’s absolutely a disability and you have every sympathy from me.

Acknowledging the difference between those with an Aspergers diagnosis who have a normal IQ, can speak, can communicate, can attend MS school etc and those who can’t is not a criticism of the former. The experiences and needs of these groups are entirely different - they should all be met, but they are different.

JanMeyer

I don't want anyone with high functioning autism to speak for families who care for those with severe autism. If you want to speak for yourself that's fine but I have seen far too many people with Asperger's trying to be judge and jury on families who have children with severe autism by saying what is or isn't allowed. Nah, those people can fuck off. We're not in the same category and if you can't understand an analogy then that's not my problem. For us, Autism = disability and for others it may not but I don't need those people who feel it's an identity instead of a disability to speak for us! That's why I said, for them it could be a paper cut but for us it's a full blown hemorrhage that we need blood transfusions for!

My son is one of those with 'high functioning' autism/Asperger's and is very impaired.

The Sheldon Cooper analogy fucks me right off - the actor isn't autistic - and all the laughs about how people like this are just quirky.

Off to see the psychiatrist now as DS's meds for his OCD aren't working.

I definitely think there needs to be more clarification around labels. Perhaps a catch all term of 'high functioning' does not work but I really don't think it's helpful to put individuals who cannot speak or care for themselves AT ALL in the same category as people who possibly could live independently one day. If your child cannot live independently and is disabled then I don't think they should be labeled high functioning since high functioning implies the least amount of support is needed.