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.

Exactly.

i have just managed to go back to work as a dinner lady this term after being out of work because of Ds for 8 years. It feels great to be back but it has also highlighted the fact that for the foreseeable I won’t be able to even contemplate doing more.

it’s exhausting both mentally and physically and there should be nothing wrong with saying that.

I agree. I have a high-functioning autistic DD. She has struggles - mainly socially and with changes to routine - but is bright, funny, does extremely well academically, performs on stage with her drama group, plays piano beautifully, writes incredible, imaginative stories and poetry.

Saying she has the same diagnosis as my friend's son who is largely non-verbal, incontinent, cannot yet read or write (he is learning), and tends to be violent when frustrated, which is often, seems ridiculous - and frankly insulting to my friend, who works so hard to be the brilliant mother and strong advocate for him that she is.

Agree, I have a friend who is a speech therapist and she feels that autism is too broad a diagnosis these days, and as such it has lost its utility in that sense.

Well as you can see from this thread OP, a summary might go like this:

Autism is not a disability, how offensive.
Autism is a disability and requires support and funding.

Some autistic people need more support than others
How offensive, there’s no such thing as mild autism

Autistic people can be high functioning in some areas and low in others
No they can’t, function refers to IQ so it can’t move up and down

Carers are not allowed to speak for people with autism, they can all speak for themselves

Non-verbal people who need 24 hour care are happy in their own worlds. It’s the people capable of having jobs and families who deserve the most sympathy.

There should be a different name given to autism where people can live independently, work and have families as opposed to needing 24 hour care.
No there shouldn’t. 24 hour care people are the same as other people with autism, they just don’t cope with it as well.

I think the above sums up some of the main discussion points and counter-arguments so far.

OP, does your DC have learning difficulties too?
For exactly this reason, I always explain that DC is autistic and has learning difficulties.

I’ve worked with autistic children - some managed the curriculum, some sat in a corner all day. A massive difference and these were kids in a special school.
I used to think ds could be autistic as a young child, then changed my mind after working with diagnosed children. Now I’ve changed my mind again (he’s late teens now and he is starting to think he might be - his MH is awful although you’d never guess if you met him as he just about gets by.
DD is also convinced she is autistic and has pretty much self-diagnosed! Yes she def has traits, and being a girl masked for years. Always found socialising hard though & can come across as ‘awkward’ - unless she goes for diagnosis we’ll never know for sure but she’s on SSRIs for anxiety and does struggle daily.
So I have two DCs who struggle w MH possibly due to autism. It’s a long road to diagnosis and as they’re both adults they need to make that decision for themselves.
if you are ‘high functioning’ it can still have an impact on you:your family in different ways from someone who is less cognitively able.

If your relatives will never live independently then it’s highly likely they are in the category the OP is concerned about anyway.

Someone who can’t express their inner life at all is not ‘devaluing’ or ‘debasing’ someone who can debate as we are. They are absolutely the most vulnerable people of all.

If you want it to be always and only about the people who have autism and not the caters advocating for them, (pst, many of these parent-caters have autism too) what are you doing to advocate for my DC? How are you raising awareness of the needs and vulnerabilities of those who cannot join in any debate because they have no effective means of expressing abstract concepts (which for the last time is not the same as not talking)?

We raised concerns when DD was 8. She was happy at school and had friends...so why did we push for testing?

Well, her being "happy at school" was actually her masking all day. We'd see the pressure of that when she got home and could drop the mask.
She has a lot of difficulties at home.

We also knew that, for girls especially, ASD can become more pronounced as they get older, when social communication gets more complicated and hormones hit. We wanted a diagnosis before we reached that point, in case we needed additional support.

We knew that rates of suicide, self harm, eating disorders and substance abuse are higher amongst girls with ASD. We wanted her to understand herself, be kind to herself and learn how to put strategies in place to make life easier.

Basically we became knowledgeable about autism and based on what we learnt, decided that a diagnosis would be worthwhile - it's a shame that somebody actually working with autistic children can't do the same.

But I'm not referring to IQ here, I'm referring to people's ability to cope 'function' with everyday life. People's profiles are often spikey and they are not one end of the spectrum or the other. My point being, it would be very difficult to separate people into different diagnoses as there is too much overlap. Of course some people will need more support than others but that's the same with most conditions. Just because the diagnosis is the same, it doesn't take anything away from the care and support needed by those struggling the most.

I think the fact they are girls and younger may have something to do with it. I always knew my middle daughter was in the spectrum, but at that age she was part of a football team, had friends, sleepovers, went out with siblings at that age.

Fast forward two years, she could no longer attend school, has been diagnosed with GAD and severe depression and is on meds. Fast forward another two years and she's still awaiting CAHMS assessment for ASD/ADHD, which is a given as far as I'm concerned. She's not attended school for over three years, might be able to sit two GCSEs this year and maybe pass one. Hasn't been out of the house this year other than for one CAHMS appointment and is on higher rate pip for both categories.

You really can't compare kids, especially difference ages/sexes and other children's' diagnoses doesn't take anything away from your child's.

zoinkss - agreed.

You really can't compare kids, especially difference ages/sexes

Then what is the diagnoses actually saying?

other children's' diagnoses doesn't take anything away from your child's.

Why did people object to Rainman? Why did people need to say ‘my child isn’t Rainman’? It is because when the largest presentation of a condition is very different, when the general understanding of how something presents is at odds with your child’s, when all publicity is about capable people who live independently, then it does take something away. It takes away general understanding in the population, amongst professionals who allocate support, amongst councillors who allocate funding and write strategies, amongst legislators who write ‘autism bills’.

AmericasfavoritefightingFrenchman

I don’t need to advocate for your child and won’t be all the time posters like yourself try to devalue the need of others whose autism presents differently.

“Someone who can’t express their inner life at all is not ‘devaluing’ or ‘debasing’ someone who can debate as we are. They are absolutely the most vulnerable people of all. “

I disagree with that. Firstly my daughter and many like her can’t express her inner life. She attends school. I don’t think children like your child are the most vulnerable actually. They have huge vulnerability which will be on a sliding scale according to differing circumstances. People like my children are at more risk of domestic violence, sexual abuse, Anorexia, alcoholism, drug misuse and suicide . They are also at risk of being over medicated and trapped in inpatient hospitals with care not suited to them and increased risk of abuse.They too are hugely vulnerable.

And as for these alleged professionals who allegedly decry the increase in diagnosis. I’d love to know there they work as it’s hugely unprofessional and at odds with current knowledge and focus. I’m seeing quite the reverse- professionals just as keen and as frustrated as parents, professionals for whom the focus on training is now including how autism can differ particularly in girls.

Funding will always focus on need which won’t change regardless of diagnosis rate. Need will vary hugely with how autism presents. I doubt very much an autistic non verbal teen fed by his/ her parents will need the weekly medical obs and psychiatric support my autistic teen with anorexia needs. Her self harm and Anorexia needs treating regardless or she will die. Her diagnosis has helped hugely with adapting her care. Likewise we won’t need the support and care autistic teens such as I have described above will need. If my daughter had had her diagnosis when she should have had she still wouldn’t have been tapping into your care and actually wouldn’t have received much at all. She wouldn’t be taking up the resources she is now because she would have known why she felt so different and struggled so much. She could have had less intense support and education to learn how to manage her disability.Anorexia, depression, anxiety and self harm wouldn’t have taken hold so virulently.

Early diagnosis is crucial.

I don't know I thought something weren't quite right with my son as a baby and he's been diagnosed with a rare chromosome disorder that causes developmental delays and mild intellectual disability. He's also on the ASD pathway so in my experience I was right to think the way I do

Why is it our responsibility anyway as parents to worry about what resources or funding our child might be using - the problem is that we have a broken NHS. I hope those worrying that a child like mine might be taking their resources away has never voted Tory.

Absolutely unreal. My son has been suicidal many times. Should I not worry about that because he's male? Next time he tells me he doesn't want to be on this earth I'll just think to myself 'don't worry about it, he's a boy so much less likely to go through with it'

You go on about devaluing but the only one devaluing is you. You are making it all about girls. Boys and any child with any severe needs don't matter to you.

This post has well and truly proved one thing - there are parents out there who have real issues with those children who have 'visible' autism. The ones that were diagnosed at an early age. The ones that were told at the ages of 2/3 years old that there child will never lead a normal life. The ones that will never be able to speak or read or write. That will need 24/7 supervision.

These are the children well and truly being devalued in this thread.

You have been just as guilty of devaluing other peoples experiences as some posters have been of yours. Perhaps that should make you rethink your own judgements and bias?

parents should be supporting each other not turning it into a race to the bottom

believe me when I say you’d much prefer to have a child with high functioning autism than a child with a learning disability and autism as depending upon the severity then you could be essentially raising a child who never develops past a certain age for example they could have a permanent mental age of 10 yrs

Haha wow. I have the latter 'type' and would not prefer a different one.

Please, you stated this thread with the whole purpose of devaluing the condition of the girlsnin your OP. If people are getting defensive it's on you, and probably what you wanted in the first place.

I totally agree however a lot of us in this thread are in the same boat, just with children of different needs. All equally as vulnerable.

I stand firm with I don't feel all autistic people fit the same criteria though because they don't. Some autistic people are hugely intelligent and can go on to have very successful lives which should be celebrated. However these don't fit the same bracket as those who cannot lead a normal life - and that includes both sexes, from those that are non verbal to those who are suicidal.

I have a friend who's son is autistic. He is extremely smart to the point that he was taken out of his primary school aged 6 because they just couldn't meet his needs - he was too intelligent. Yet he has the same diagnoses as a child who at 6 is completely non verbal.

@AnorLondo Again - please show me anything that I've said which shows I am devaluing girls. I'd really like to see the exact sentences that show where I have?

Maybe 'these girls are 12?'

I'm just simply pointing out the ages of the children.

I think the whole issue stems from fear. Fear for the future of our children.
As parents we want all want the best for our children.
Parents of children who are diagnosed very young and are on the extremely severe end of the spectrum have to face this fear early on and have to come to terms with the fact that their child will literally die if they are not cared for. If not through an accident by starvation and dehydration. It's the realisation that without care they would be incapable of existing, in any way. This dread is overwhelming.
Obviously alongside this are all the other usual worries, will they be treated kindly, will they be understood if they are in pain etc.

Parents of children who are also Autistic but aren't as easily picked up on also fear for their children. They want the best outcome for them, worry about their future. They worry that if they don't access education they will be unable to fund themselves when older, but won't qualify for help. They worry that because their autism isn't so evident then they won't be given the understanding they need from others, they fear they may end up in jail, or abused. They fear that their mental health will degenerate and cause them to risk taking their own lives.

All parents want to prevent suffering for their children. The first group is saying "please don't forget that my child's autism means they will die if they aren't cared for every day of their lives" .

The second group is saying
"Please remember that Autism isn't always so evident, and if my child isn't supported they may end up unable to cope, possibly leading to either self harm or harm from others, and I'm scared of that happening"

Funding will always focus on need which won’t change regardless of diagnosis rate.

That is very naive.