To think no, autism is not a ‘gift’?

[RowRowYaStoat]

Does anyone else feel like this?
I’m feeling like the worlds worst parent right now. 12 year has been crying and kicking off since 7am this morning. After an awful few months , my patience is wearing thin.

Everything that goes wrong is my fault.
I honestly feels like he hates me (he doesn’t) but the way he talks to me, the way he shuts me out but expects me to fix everything.

The rigid thinking, total lack of compromise. The shouting, screaming.

The resistance to any change or expectation that he should do something himself.

The effect on siblings, the resentment they often feel. The fact my marriage is pushed to breaking point because the stress is immense.

And the lack of empathy from family and friends: “autism is a gift… embrace it !”.

I love my DS dearly. I’ll do anything to make him happy , but it’s just never enough. I always feel like he’s not happy and I worry how his perception of things is so different to the real situation.

And I lost my patience today.

Please tell me I’m not the only one to find this damned hard? Or am I just rubbish at this?

@user1478172746 I really am pissed off with your post-my son has grown up absolutely cherished and loved and adored by my husband and I while we still sometimes get incredibly frustrated by his behaviors-it's not all negative. You may find this thread grim but I actually think it reveals you have a real lack of empathy-it's universal to see parents of NT children say these things too except those children can care for themselves at maturity and live independently whereas we SN parents don't have that luxury for our children. It's how we cope

Autism robs my child of far more than it gives them. so no, not a gift for us.

I've been catching up with this thread and thought I would add some worrying statistics I learned this week at an autism support group (I'm an autistic adult).

I already knew the suicide rates for autistic people were 7 times higher than the average population but it is the leading cause of premature death too.

The gift that keeps giving.

already knew the suicide rates for autistic people were 7 times higher than the average population but it is the leading cause of premature death too.

Have you got a source?

@anothernewtop

already knew the suicide rates for autistic people were 7 times higher than the average population but it is the leading cause of premature death too.

Have you got a source?

I've seen this statistic too. A quick Google so far has only brought up this Danish study with figures not that high but still higher

www.healio.com/news/primary-care/20210212/teens-young-adults-with-asd-three-times-more-likely-to-attempt-suicide

This is the source of the 7-9 times more likely (I'd previously heard the stat 9 times)

pubmed.ncbi.nlm.nih.gov/31238998/

This thread has just reminded me of when I was told that I should be more ambitious for my ds.

I have had lots of people telling me they 'can see his potential' as though I was thinking of chucking him in the bin

Some folk just have an opinion on everything.

I don't understand the 'leading cause of premature death' figure? Does that means 'of autistic people' not generally? Sorry, I read the links but one is just a huge jumble of figures to me

The numbers in the Hirvikoski study are the increased incidents.

The risk for suicidal behaviours [reported as odds ratio OR (95% confidence interval CI)] was most increased in the ASD without ID group with comorbid ADHD [suicide attempt 7.25 (6.79-7.73); most severe attempts i.e. requiring inpatient stay 12.37 (11.33-13.52); suicide 13.09 (8.54-20.08)

This is saying that the highest suicide risk compared to the general population was for autistic people without intellectual disability who also have ADHD.

For this group, suicide attempts were on average 7.25 times higher m; attempts requiring a hospital stay were on average 12.37 times higher and completed suicide was 13.09 times higher than the neurotypical population.

@bitheby

Thank you

Here's an article with some commentary on that study.

The leading cause of death for autistic people is epilepsy followed by suicide. It also has stats on the average age of death for autistic people compared to non autistic people 54 versus 70 (or 40 for those with autism and an intellectual disability).

autismawarenesscentre.com/three-main-causes-early-death-autism/

I know these figures aren't cheerful but this is the reality. I know that my condition is not the same as the children many parents are discussing here. I have a very high IQ (she says modestly), went to Oxbridge but have had suicidal thoughts since I was a child. I hope that I never act on them but life is a slog, a really slog.

You are not alone. One of my dd's is like this. I dread everyday atm.

Apart from epilepsy (and suicide) it’s generally believed that those who are on the spectrum don’t receive the medical care that others who are not on the spectrum do.

It’s why our loved ones need advocates, people around them who know them virtually inside out, and can tell almost immediately they are unwell even if it’s just noticeable because of their body language.

It’s not good enough waiting till something crops up before having it seen to so we must always fight their corner even if we are being dismissed by Drs. It’s for this reason that my son has two general health screenings done every year - the earlier something is noticed the better it is all round.

Apart from epilepsy (and suicide) it’s generally believed that those who are on the spectrum don’t receive the medical care that others who are not on the spectrum do.

I can well believe that. DS has a very complex medical history and even so still so often I have to really push for things to be taken seriously because he doesn’t respond in the same way. He is known to be a brittle asthmatic but I have argued with many a doctor that just because he is bouncing and stimming that doesn’t mean he isn’t also very ill - this is the child who when a toddler was on oxygen and still managed to get himself knotted in the tubing bouncing up and down his cot

Yes, I felt like this for a few years

Most parents would swap the “gifts” for a child who could speak, sleep, eat and poo!

We’re all good right now - aged 9 and very happy and productive but dreading puberty to be honest

@BananaBoatFeet... This is my dilemma and every-single-day worry for my son, going forward. When I’m gone and DH, he won’t have anyone. We have a very good friend whose son may be able/willing to be a guardian for DS who’s now 21 but really, it’s a big ask.

We try every day to get him ready for life without us but even DS is verbalising “I don’t think I’ll manage on my own”. He recently had “sore skin” where he’d been over washing, as it were. He only mentioned it to me because he said it was getting to the stage where his clothing was uncomfortable. I asked to see it and another three days went by before he showed me. When I say, he’d removed layers of skin on huge patches of his body, I’m not exaggerating. He needed smothering in emollient from the Dr to heal it.

I despair. I really really do.

As I write this, I’m close to tears, where I’ve spent the past 19+ yrs, about my beautiful son.

Yesterday encountered a really upsetting post in a parenting group I’ve felt was very supportive in the past. A couple of autistic adults talking about how parents of autistic children are martyrs, how parents of children with other conditions don’t act this way and how it’s no different raising an autistic child than an NT child.

Several of us reacted poorly to this, including other parents who are autistic. We were told tough shit as being a parent of an autistic child isn’t a protected characteristic. Admin came along, backed them up and closed the comments.

So that another group I’ll have to leave. Feeling really sad about it. I’ve never seen parents of children with other disabilities spoken to like this, in the support groups for those that I’m in.

Apparently we shouldn’t say that it’s difficult to parent an autistic child because that’s unfair to autistic adults. Apparently we should say “it’s hard to parent because my child is non verbal”, even though they are non verbal because they’re autistic.

This is honestly one of the few places that I can have an open discussion about how I feel without being attacked (usually). So that’s something!

@SinkGirl

Yesterday encountered a really upsetting post in a parenting group I’ve felt was very supportive in the past. A couple of autistic adults talking about how parents of autistic children are martyrs, how parents of children with other conditions don’t act this way and how it’s no different raising an autistic child than an NT child.

Several of us reacted poorly to this, including other parents who are autistic. We were told tough shit as being a parent of an autistic child isn’t a protected characteristic. Admin came along, backed them up and closed the comments.

So that another group I’ll have to leave. Feeling really sad about it. I’ve never seen parents of children with other disabilities spoken to like this, in the support groups for those that I’m in.

Apparently we shouldn’t say that it’s difficult to parent an autistic child because that’s unfair to autistic adults. Apparently we should say “it’s hard to parent because my child is non verbal”, even though they are non verbal because they’re autistic.

This is honestly one of the few places that I can have an open discussion about how I feel without being attacked (usually). So that’s something!

I have learnt some parents just don't get it.

My ds has adhd as well am i allowed to say its tough ?? Guess not.

I did learn that some people really don't get it. Its fine so long as they don't tell me what its like.

Autism is a protected characteristic, because it is a disability.

I feel sad when I see glimpses of my dd 9 behaving like a NT child when she is ok and doing fine and then the meltdowns come and I realise this is her in reality. 🥲

I'm totally worn out today.

Ideally, acknowledgment that some people's gift can actually play out as another persons burden should be recognised in a supportive way.

@Gladimnotcampinginthisweather

Autism is a protected characteristic, because it is a disability.

They meant that being a parent to an autistic child isn’t a protected characteristic, so therefore they can be as vile as they like about us.

I’ve never encountered a single one of these abusive “autism moms” that allegedly make to such a huge proportion of parents to autistic children. I know lots of parents in this situation through things like EHCP groups and their resilience and fight is incredible. I’m sick of the attacks and being expected to just shut up.

I'm a student HCP specialising working with people with learning disabilities and autism. I've always felt so much empathy and regard for parents. When we become parents we envisage a time when they will be independent for some parents they have looked after their disabled children until adulthood and some beyond what they should its incredibly stressful there should be much more respite services available.