Reason my DS has learning difficulties

[Mumstheword37]

Posting here for traffic. My son has undiagnosed autism (hoping to have official diagnosis in a few
months). He also has a diagnosis of moderate learning difficulties and has working memory issues. He’s 9 years old. When he was approximately 3.5 his paediatrician sent him for a blood test to see why he had developmental delay as he was way below his age and had very bad and speech delay. He’s still under SALT now, but very much improved compared to when he was younger. The blood test showed nothing. When I asked the paediatrician why he has learning difficulties and if he would catch up, she just said who knows. She was utterly and incredibly rude overall.
I’ve been fighting for years for my son to get help-EHCP and official Asd diagnosis but i keep thinking about the learning difficulties side to it-why does he have them? My slightly older child is incredibly bright. I didn’t drink, smoke, take drugs-literally not even a single pain killers whilst pregnant despite desperately needing them. I stopped taking my antidepressants as soon as I found out I was pregnant. I’m just curious. Can I ask for this to be looked into more? I genuinely don’t know if that is an option. To me my son is absolutely perfect, but he finds life so hard at times and i feel bad for him. Like I said he’s 9, but developmentally he’s more like a 4-6 year old.

It's nothing you did. You don't cause autism by doing something wrong. It's like any genetic condition - sometimes it just happens.

My eldest DD has autism and ADHD. She's struggling massively at the moment with education and socially.

My youngest DD is neurotypical and finds school easy and has good social skills.

I know it's easy to dwell on things and analyse what happened during your pregnancy and birth etc but when it comes down to it, it's just the luck of the draw really.

I hope your son gets the support he needs. Do you have support too as a parent of a SEN child?

Sometimes there's no obvious reason to why someone has learning difficulties and the cause can remain unknown.

There's nothing you did or didn't do that caused it.

My son sounds very similar to yours but he's a lot younger and has a genetic condition and most likely autism ( on the pathway) he is non verbal and cannot talk. The genetic condition came from his father (we found this out after both children were born).

We don't know if my daughter has the same genetic condition but at 15 months she can talk (not fully) but says a lot more than my son, is nearly walking and has amazing social communication skills.

Both my pregnancies were the same and both children have been raised the same.

autism is often genetic, occasionally related to being an older parent I’ve heard. I know a few highflying parents with autistic traits (investors, mathematicians, consultants, business leaders). They have had high flying academic children similar to themselves and also a child with learning disability and autism combination. To me (and I could easily be wrong) it’s like the flip side of the same coin, with autism manifesting in a different way. I’ve always assumed that the gene which makes a person excel academically can also make a person have learning disabilities … but who knows?!

My children are 25 and 21. Eldest very bright and we strongly suspect she has autism. Second daughter everything about her development and early years different. So I was shocked when she was diagnosed with Global Developmental Delay. However she does not have autism. I pushed for an assessment and the doctor who was the gatekeeper to full investigation said absolutely no autism.

I have questioned why so many times, there are no answers. Was it because we were in a car accident at 23 weeks gestation? Was it because DH fell asleep with her and she fell down the crack of the sofa as a new born? Was it because of the severe chicken pox she contracted at 16 weeks which started our journey with paediatrics. We had genetic testing , she has inherited one mutation from us both and one she has created all by herself, extra copy of a gene on chromosome 11 but this does not explain her intellectual disability.

DD2 slipped through the net. Didn’t get an EHCP until her mental health declined. She spent time in an adolescent psychiatric unit at 15. Very tough at the time but the teacher at that unit helped get her the EHCP she needed to get into special school. She has never taken any exam. Has zero qualifications. However after SEND school she went on to extended learning and then onto supported internship. This gave her work experience and she applied for another job and has been in paid work for a year now..

OP fight with everything you have to get an ECHP. It really opens doors. Don’t let your child struggle in mainstream school if they start showing signs of not coping. They mask for so long then burn out. We even had a period of home education until we got the SEND place..

https://www.lanc.org.uk/related-conditions/autistic-spectrum-difficulties-asd-adhd/

I do know that autism can be comorbid with other diagnosis.

He may have autism with learning difficulties which are related, he could have two separate conditions, he could have a condition that causes learning difficulties which includes autistic traits. Whichever it is it's nothing you have done and it isn't something a dr can give you the answer you want, who knows or similar is being honest. Spontaneous mutation to cause a genetic condition is definitely possible

My dd was non verbal at 3, nobody could tell me her prognosis ... speech did kick in so she copes in our world pretty well, definitely autistic but not the severity that was mooted aged 3.

OP you might think knowing why helps but really it doesn't help. My Foster son has moderate to severe learning disabilities, global developmental delay, some autistic traits, and FAS. The FAS is almost certainly responsible for the rest. That's what his consultant told us. Knowing why he has lifelong learning disabilities and is unlikely to ever be capable of looking after himself is heartbreaking. All we can do is try to work with what he has. Constant repetition for basic tasks or little rhymes to help him remember things seem to help. He has what his consultant calls significant memory deficit. Basically he forgets things if not constantly repeated and discussed with him. Actions can also make a muscle memory. I've been trying to teach him to cook 2 basic meals. He is a late teen. If we cook the same meal repeatedly maybe 3 times a week over 2 or 3 weeks he has some memory of what to do. If I don't cook this same meal with him for a week or 10 days he's completely lost what to do. I feel like we go round and round in circles doing this 'over learning'. Sometimes I wonder if it's even worth it. Same with reading. He knows some words providing we go over them every couple of days. If I try to introduce more than 1 new word every couple of weeks he just forgets a couple of the old ones he previously knew. I can't even feel angry at his Mother who drank all this alcohol and took all these drugs because she's dead from an overdose. He'll pay the price for what she did for the rest of his life. Sometimes knowing actually makes it worse. If I thought it was just random bad luck/chance, somehow it wouldn't be so bad but somehow knowing someone else's actions and choices caused it makes it far, far worse. In your case it is likely just random/chance or gene mutations.

Research is ongoing. Here’s some of what we know so far:

https://www.autismspeaks.org/what-causes-autism

Please do not promote anything that Autism Speaks stands for. It is very much disliked amongst the autistic community.

Autism Speaks is a very controversial organisation - it frames autism as a disease that needs to be cured. Google articles written about them. If you are autistic, you are born autistic. You do not develop or catch autism.

That is interesting. It seems like depending on where you are on the spectrum though, you would feel differently.

If you are high functioning I would think you'd see it less like a disease to be cured.

If you are caring for your child who is nonverbal, unable to care for themselves, and may need to go into care I would imagine you'd give anything for a cure.

Most things like this are chance genetic conditions.

One of my DC has some health issues (physical mostly) and her specialist thinks its likely genetic in nature. My other DC is completely normal.

On a population level, the rise in things like autism may be linked with us all having children later. Older fathers and mothers generally produces a slightly higher proportion of offspring with genetic conditions. This isn't something that necessarily impacts on an individual level but across the global population it may be a factor.

It doesn't work that way, it is not like wave a magic want and learning difficulties happen

Unfortunately there are still a lot of areas in medicine that we know very little about. There may well be genetic or other factors at play that they just don't know about yet. The paediatrican might have no idea why he has developmental delays or whether he will catch up at all, but shouldn't be rude about it. Its hard not knowing and trying to make sense of it all, but if the paediatrican took a detailed history and looked at pregnancy and birth and has ruled out any relevant genetic conditions there's probably not any answers to be had.

My middle boy is Autistic and had significant developmental delays, these became obvious around 3.5 years old. I say had because for a lot of things he has caught up. We had a lot of targeted intervention early on OT and speech. Then with writing, reading and spelling. One thing I've found is I have to find a way to teach him that he can take in. If your son has significant working memory issues than this could be playing a role in his learning difficulties. Its fairly common for Autistic children to have low working memory. My DS has a typical spikey profile, with some things he's really good at and other things really bad, this can make it much harder to learn than for a child who's mid range or even low across the board. So if he's really low in one area like working memory that can have a big impact on the other areas and make it hard for him to learn even if there's no other issues. My DS also has big sensory issues and would simply shut down and take nothing in as a little kid in.certain environments so this has a big impact on his development.

No one will be able to answer that. It might be genetic. It might be a random mutation. It might be acquired.

Also, there is a difference between "learning difficulties" and a "learning disability". It is an important distinction. In your case I think you mean your son has a learning disability. A learning disability involves having a lower IQ level. Learning difficulties are things like dyslexia, dyspraxia, ADHD etc. These are not related to IQ. You will likely need to use the correct term when you are trying to seek support for your son.

I would love my DD to not have to face the challenges she has on a daily basis and for people to understand and accept her more. I understand what you mean by "high functioning" but labels like this imply that someone doesn't struggle. They do, but in different ways, particularly if they don't "look" or "appear" autistic. My DD seemed to cope more or less at school but the mask would come off at home and people didn't see the meltdowns, dysregulation and eventual breakdown she had aged 11.

The point I was trying to make in my original post is that a person is born with autism. It isn't a disease that you catch or develop and so it can't be "cured" for people who are autistic, any more than you could "cure" a person with Downs Syndrome (for example). Acceptance, understanding and accommodation of the differences and challenges facing neurodivergent people is important.

OP, I said that I think you’re not being unreasonable, because I ‘get it’. I also feel that I ate and drank the right things in pregnancy. I have one child who is social, clever and very talented. My other child is Autistic and has severe delays. I have no idea whatsoever what the future holds. She’s had genetic testing and they’ve found nothing. I also would like answers, but I don’t think I’ll get them. I do think that I have Autistic traits- whether they amount to ASD, I don’t know. So maybe genetics is my answer. So I do understand, I really do.

What’s happening with the EHCP?

I think it's normal when your child is struggling to think what could I have done differently. My son has autism and it was very obvious to us from very early on. Would you be able to afford a private diagnosis. It does make it a bit easier when accessing supports. It's a very different life having a child with special needs you basically just have to change everything about your life and it can be overwhelming at times.

I had genetics testing on the nhs. Full micro array. Paed was insistent it was random bad luck with my first sen child. By the time his brother came along with even more severe needs it clearly wasn't random bad luck.

Have you had a EP report? My son with severe needs has a fine IQ. His siblings IQs are all at upper cut off of normal but his is bang in the middle of adverage. Since we found this out we have pushed him a bit more and he has come on remarkably since.

He got his ehcp at 4. Since 7 he has be placed in independent SEN schools with therapist on staff

Information processing and communication and language all fall under ASD spectrum. Lots of strategies you can help your child with. I think you'd get a lot of help from counselling, to help you accept your child and then calmly start to research ASD and learning difficulties. Look for the strengths your child has and build on them.

I agree fully with this ^

It's highly liable to be genetic. DH has autism, so does DS2. I have ADHD, so does DS1 and sadly DS2 got that too - so he inherited the challenging genes from both of us.

My advice: stop looking for expert help on NHS. It takes a colossal amount of time and energy and you are constantly knocked back. Invest that time and energy into becoming an expert yourself. Learn and trial various ways to aid his development in SALT, social skills, eating if he has ARFID, physically if he has co-morbid dyspraxia. Read books, watch expert talks, look up worksheets online.

Start with gentle CBT/DBT stuff too, as autism often develops anxiety and depression, especially as the social issues get more pronounced. It's commonly believed that CBT/DBT doesn't work for autistic minds, but ime, it just takes far longer to sink in, be put into practise and found effective, like pretty much everything else in life - it's just a longer, slower process. But it is still a process and progress is made, so the earlier you start, the better.

Absolutely many people get learning difficulties and learning g disabilities mixed up.and there is a huge difference
My son has severe autism and severe learning disabilities in his case e has an underlying chromosome deletion
That occurred randomly
There is no point agonizing why it happened ,it did and it is what is.

This isn’t correct. Dyslexia, dyscalculia and so on, are termed ‘specific learning difficulties.’ However, if a child’s difficulties are not specific in one domain, they can have moderate learning difficulties. This can be diagnosed by an EP following an assessment, and is absolutely related to IQ (generally they look for IQ of 70 or less).

A learning disability is generally diagnosed post-18 (but can be identified sooner for more severe cases). To receive this diagnosis on the NHS, a child will have moderate learning difficulties plus difficulties in activities of daily living. There is a specific assessment for the latter, often carried out by clinical psychologists in adult learning disability services.

I find it interesting about fas as it only seems to be found as a cause for adopted children.
Like they dont want to accuse others of drinking too much.
With they think 5% of children having fas its higher than asd.

Obviously not everything is fas though (i didnt drink at all in either pregnancy or before for actually years (though did drink heavily in my uni years)

I think asd is sperm or egg quality and a few other factors (dp was already slightly into obese category) and ive got insulin resistant pcos
But there are issues in our wider families (adhd/dyslexia)

A lot depends on memory for learning. Some people can reinforce memory by repeating stuff.
Some asd people remember too well so it does seem 2 sides of the coin.

@DodgeDog
It is genetic.. but it's ridiculous to say it's to do if parents are older.. where on earth did you hear that?