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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

AIBU to be frightened of my child having a disability that runs in the family

127 replies

daffodilsoverthebridge · 20/03/2016 07:20

Opinion seems to be divided as to whether or not it is genetic and there's no prenatal screening.

I am now in the awful position where I want a baby but am petrified of passing it down. W

OP posts:

Owllady · 20/03/2016 12:20

I think you have to consider if it's not autism it could quite possibly be something else. I have a genetic recessive condition that runs in my family so I had genetic counselling prior to having children, thought everything would be fine but had a child with a complex disability (and autism) anyway! It has never occurred before in the family. Not all children with autism are unhappy, my daughter isn't (she is 16 btw, so not a small child) but ultimately it's up to you

Samcro · 20/03/2016 12:40

Owllady same here. brain injury at birth....
i have friends who had nt babies.... stuff happened and they now have very disabled adult children.

Owllady · 20/03/2016 12:56

I know :( my dd had a major operation last year and the ward/hospital is the brain injury specialist for the area and you know, shit really does happen and can happen at any time. Life has no guarantees unfortunately

greenfolder · 20/03/2016 13:22

I have a nephew on my husbands side that has autism and a nephew on my side that has aspergrers. I really didn't think about it when planning dd3. It's something that you need to come to terms with. In my experience it's stuff that you never even think about that comes out if left field.

SauvignonBlanche · 20/03/2016 13:43

I agree that the only way you can guarantee nit to have a child with a disability is not to have a child, what's to stop a child who appears to be neuro typical from later developing a disability?

Neither my DN who has severe autism or my DS who has AS appeared autistic as babies, it became apparent later.

When I took the decision to have a child I knew I would love and accept that child no matter how they turned out and when I was told that there was bad news at DS2's scan I looked ad DH and knew we'd cope with anything; except we we unable to as he'd died.

I remember saying that of all the disabilities my child could be born with the one I would fear most was autism, this was because I'd met achild with autism who did not display affection.

Don't let your limited personal experience make you think that all people with ASC are the same. My DS is an adult now, he's very happy, very clever and very affectionate, this does not mean all teenagers with AS are though.

DH should be home with him any minute as he's on his way home from university for Easter. I wouldn't change anything about him.

EdYoshi · 20/03/2016 13:51

I think when you decide to become a parent, you have to always bear in mind that it might end up disabled and dependent on you. I have a DD who has severe autism and was diagnosed age 4, and a DS who is completely NT, but was badly injured in a RTA aged 8 and is now severely disabled. Life is always a gamble, and nobody can assume that their child is always going to be healthy whether there are genetic issues or not.

Sometimesithinkimbonkers · 20/03/2016 13:56

I'm the proud owner of DS 6 he functions 18-24mths. He has severe ASD, epilepsy, arthrogryposis, feeding problems. His is part of a rare gene mutation. He started the mutation.
I can honestly say he is absolutely amazing! He is very hard work and challenging but with him and through him I have met some of the most amazing real people !
Even if it's not autism it could be something or anything else!
Me and DH created our wonderful son. Love is enough .. Well love, patience and the ability to see the positives in everything in life!!!!
All children are a blessing!!!

lougle · 20/03/2016 14:23

All children are unique. I have 3 girls. DD1 has a probably genetic brain malformation. DD2 is officially NT but we are convinced has ASD (HF). DD3 is very much NT but really highly strung. They all have strengths and weaknesses.

If you want to avoid all disability, then frankly don't have a child and definitely don't adopt. Even children without disabilities can be very badly affected by the trauma of the adoption process.

But honestly, SN isn't the worst thing that a person can experience.

pigeonpoo · 20/03/2016 14:34

I'm not sure it's that OP doesn't want a child with disability per se or can't see value in those with it

I think it's more of a guilt thing, not wanting to be the cause of it

But that's being over-responsible and over-controlling - it's not possible to not be the cause, because nobody knows the cause.

Therapy can help that OP

pigeonpoo · 20/03/2016 14:35

Sorry should say not possible to BE the cause

x2boys · 20/03/2016 15:03

definatley lougle s/n is not the worse that can happen my son has severe autism and learning disabillities but hes lovely and very affectionate its not easy he can be dstructive and an absoluter terror but hes also funny and very happy .

pandarific · 20/03/2016 17:15

I understand your feelings OP. I've got a similar fear.

When I've posted about my adult sister's behavioural issues, I've had people suggest she could have autism / PDA, though there will never be any diagnosis (and it may not even be that). My uncle I believe has Aspergers, so I suspect there is something along the lines of autism in our family.

Thing is, my sister and my uncle are very different people. I'm not afraid of having a child who is like my uncle as he has such a lovely, sweet personality - but the possibility of having a child like my sister makes me really scared because I know I could just not cope with that for the rest of my life.

I've had to talk to my OH about it, and he understands how I feel, though there's not really anything we can do about it, per se. Do talk to your partner, make sure you're not alone with your worry.

PeppasNanna · 20/03/2016 17:34

I have 2 ds with ASD & ADHD. Both in Special Schools, very challenging boys but very bright academically.

Had I known what my life & theirs would be like, I wouldn't have had them.

The reality is we don't have a life, we exist.

They aren't happy children. They are deeply anxious & rigid. They are very socially & emotionally delayed. They rarely would leave the house, if given the choice. Its miserable, exhausting & never ending.

I have fought for every tiny thing. Assessments, diagnosis, education, therapies, everything.

Very unlikely they will live independently. I will care for them until i die.

That is my reality of having disabled children.

ThinkYouKnowMe · 20/03/2016 18:06

Ive got 2 boys, my youngest has severe autism. It can be very hard, but also very rewarding. I also do worry about what will happen when he is older. When he was getting diagnosed they offered to have some tests, to see if there was a link. I decided to to not have them done, I didn't see the point as I knew then that I wasn't going to have any more children.

The way I looked at it, was A) my next child could have autism and B) I didn't think my youngest would be able to cope with another sibling.

I feel guilty alot of the time because my eldest doesn't get as much attention he deserves because of my youngests disabilities. But they are both happy little boys, so I hope I am doing something right.

JellyBellyKelly · 20/03/2016 18:13

I've only read part of the thread.

My DM had a heritable post natal condition that I had a 10% chance of getting if I had birth children. Her illness had a big impact on me growing up.

After months and months of agonising, DH and decided to adopt.l, knowing the risks. It hasn't been easy but our children (2, DS and DD) have no serious issues.

I know you've said you won't be approved to adopt but I just wanted to give one good news story about someone who was in a similar position.

KittiesInsane · 20/03/2016 19:11

This is slightly off-topic, but what the hell, here goes:
DC2 has grown up alongside a brother with autism, depression and OCD. Last week he heard a schoolmate saying something worrying similar to his brother in a 'dark patch', and went to talk to them. It turns out the student also has severe OCD and was selfharming. Ds (I'm still boggling at this) made them an urgent doctor's appt and went with them to it, saying he knew that was what ds1 would have needed.
I think what I'm trying to say here is that familiarity with a condition can make you more insightful?

FauxFox · 21/03/2016 12:36

Kitties you must be so proud! What a wonderful son you have, so pleased there are people like him in the world

Owllady · 21/03/2016 12:57

Kitties :) siblings are just fantastic aren't they?

Original poster

daffodilsoverthebridge · 21/03/2016 12:59

He made them a doctors appointment? How?

OP posts:

MrsDeVere · 21/03/2016 13:17

This reply has been deleted

Message withdrawn at poster's request.

KittiesInsane · 21/03/2016 13:18

That's the bit that's boggling me, Daffodils, as he's never made a GP appt on his own account, but he persuaded the other student to stand next to him while he made the call (they wanted full name, DOB, first line of address etc.), then he skived school for the afternoon so they could both attend, as he thought she might not be able to face going through the door alone. Other student has now been referred to CAMHS urgently.

DS is in a fair amount of other school-related bother for chaotic organisation, missing deadlines etc, but yes, I'm proud of him.

Original poster

daffodilsoverthebridge · 21/03/2016 13:21

Well goodness yes :) he's had more luck getting a GP appointment than me!

OP posts:

KittiesInsane · 21/03/2016 13:24

God, yes, it's a lottery, isn't it? He did say initially they tried to give him one for three weeks' time but he stuck to his guns. Maybe they heard a rising note of panic coming through?

IoraRua · 21/03/2016 13:30

This is a very hard issue to deal with. As someone who has a sibling with autism, if I could have tested during pregnancy for it I would have, and would have aborted if needed. The stresses autism put my family through make me quite happy to justify that to anyone.

Of course, if my dd turns out to have autism I'll love her and do the best for her, that goes without saying - but I would prefer to have the option to avoid it if I can.

IoraRua · 21/03/2016 13:41

It weighed hugely on my mind during pregnancy op, and still does. In the end I weighed up everything and decided to have a child, but if she does turn out to have autism I will be kicking myself.
When I look at my brother today he is deeply unhappy and years of violence, manipulation and aggression has worn my parents down. I went through years of therapy as a result of what I grew up with.
If I could take autism away from him, I absolutely would - for his sake and for our family. He wouldn't be the same, but he would be better off, and in his calmer moments he'll tell you as much.

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