To ask if your dc has autism..

[questionsaboutautism]

Do they manage to live a fairly normal, happy life? I hope my post doesn't offend anyone but I'm extremely concerned about dc1 and am awaiting the health visitor to carry out an assessment for the 2 year check up. But in my gut, the more I learn about it, deep down I really don't think his behaviour is normal for his age and is showing several red flags in my opinion.

I feel like I'm on the verge of a complete breakdown to be honest and am sick of all the shit life seems to be throwing our way over the last couple of years.

I'm just so worried about his future and how he'll cope with day to day life?

My son has specific language impairment, however he was also assessed for autism. At 2 our lives were pretty difficult with him. Constant meltdowns, no sleep, poor eating, couldnt take him anywhere.
He is now a changed child now at 6. Its been a few difficult years to get to this point tho. The meltdowns still happen though much less frequently. He attends a speech and language unit instead of mainstream school and is doing fantastically. On par with his mainstream cousins in terms of school work etc. Still quite immature socially but is getting there.

One of my dc has autism. They do well at school, have friends and a pretty normal life.
That’s not to say that all children with asd will have a ‘normal’ life whatever that is. There are so many variables like whether they also have a learning disability, whether they have severe sensory/behavioural issues etc.
But a hard life isn’t a foregone conclusion imo. There are certainly a lot of kids in my dcs class experiencing more difficulty with no diagnosis of anything. In fact, his autism often keeps him out of trouble as he follows the rules and isn’t easily influenced by others.

DS is 4 now, diagnosed last year just before his 3rd birthday.

I knew there was something wrong with him, unfortunately the rest of the family couldn’t see that( he’s normal, you’re imagining things, all kids develop at different pace, yada, yada).

At the toddler groups he was sticking out like a proverbial sore thumb. No interest in toys or the other kids, literally walking vegetable staring at the walls for hours.

At 2.5 he started screaming for hours. No communication at all, a few words he’s had disappeared. Awake half a night staring at the walls again.

Fast forward now.

Still developmental delay but Speaking a few words, counting to 10, heavily into letters, sounds and phonics, fantastic motor skills, kissing and cuddling, wicked sense of humour( which is apparently higher cognitive skill)

Hang in there OP, bang on every door you can to get help. It is fucking hard and hat off to anybody who has to go through this autism shit.

My DS2 has autism. He was DXed at 3 and at that time had hardly any speech. He's 19 now and he went through mainstream school with a statement of SEN, which transferred to an EHCP for his last 3 years.

He's of average intelligence so classed as high functioning but he's very affected by his autism. He goes to college and is doing a computing course but with no great enthusiasm. He got reasonable GCSEs but nothing fantastic.

He has no friends of his own and isn't interested in having any. He's very dependent on me for interaction. It can be quite consuming.

My marriage did end and while ExH insists that DS2 wasn't a factor, in reality he was. ExH did his duty as an EOW father until DS2 left sixth form college but now it's apparently down to me.

DS2 is lovely and no trouble really, and he's a happy soul so long as you don't make him work. He doesn't need much in life but he won't join in with much either. He doesn't enjoy holidays anymore or trips out as for most teenagers or 20 somethings most activities involve friends, and would rather stay at home. Because I don't feel I can leave him alone for too long makes it rather tying.

Sorry not to be hugely positive but I would say I love him very much, can't imagine him any other way and life without him would be different but not necessarily better.

DS has ASD and ADHD. He’s 10, and he’s fine, happy, not really got any friends, but seems well enough liked. He is content just to have us and his sister. Medicating for the ADHD made a difference, he can concentrate in school, and has better control over his emotions.
It’s just who he is, I don’t see it as a problem, it’s just a description of his type of personality. It causes some issues as society isn’t set up for people like him to fit in easily. But if he wasn’t autistic, he wouldn’t be him.

Sadly not.

EllenJames - I am in a very similar situation with my DS a couple of years younger at 17. He has no interest in socialising outside of school. He is classed as HF but is below his age academically and he currently attends a specialist school with a statement. He is very compliant (maybe too compliant) and has no behavioural issues but does lack confidence and lacks independence/socialisation skills. He is due to leave school next year and I am floundering around as to where we go next.

As a previous poster mentioned you have to shout loud and keep going through the various processes (statement if required being a key one). It can be soul destroying and there were plenty of times where I wanted to throw in the towel when jumping through the many hoops but, you pick yourself up again because you have to.

Having said all of the above I do have a very happy DS both at school and at home and he has no obvious worries - he leaves me to do all the worrying for him

My DS2 has autism. So does DH. So does my dearest friend. I must have a thing for autistic people. They are all wonderful people with great success and happiness in some areas of life and concerns and weaknesse sin other areas. Just like any other person.
I used to worry massively for DS. And I still worry about DH a lot, as he has no friends, not a single one. But he is happy enough - family is what matters to him, and he has lots of interests. He's a great dad, and DC adore him. Obviously the compromise in life depends on where someone is on the spectrum but with the right support frm as early as possible, there's no reason why people should be isolated and struggling.

Hi I'm autistic!
I'm fine, I still struggle with sensory problems but I own a house, have a good degree from a proper uni, run my own profitable business, have a good relationship and have a relatively normal life. ( what is normal?)
You have to play with the hand you're dealt, none of this "I struggle with this becuase I have autism so I'm not going to do it" more "I struggle with this becuase I have autism so I'll work harder"

My ds aged 6 has autism and learning disabilities and attends complex needs school. He is one of the happiest children you’ll ever meet - because his needs are being met and catered for. The best advice I would give anyone is fight for everything you need - apply for an ehcp early if you think your child needs one, apply for special schools if you think your child might be best there (we pushed and pushed for one) and never feel you have to apologise for your family doing what’s best for your child. Ever. We plan our lives around our son and do what suits him- we leave early if he’s not coping and don’t visit noisy or crowded places.

Life is not what we expected but life is good. We love our son to the moon and back just the way he is.

My 20yr old is struggling massively. He’s not been able to mix socially at any point in his life and now loneliness is hitting him very hard :(

My 9 year old is very happy in his setting. He can get anxious when out and about but we do our best to prepare him for that. He just started a special needs school which has made life much easier as his therapies are now done in house, and equally, it gives us a little break from his rules and regulations. 

I sometimes worry that he won't leave home, but he is high functioning and so I try not to worry to much.

In the words of his specialist, 'he will lead the way, and we will follow.'

Hugs to you. The initial part and the year after the diagnosis were the hardest for me as there was so much to digest. 

And another vote for shouting loud. Roar even. Shy bairns get nowt.

Thank you so much for all your replies. I’m struggling to take it all in to be honest and I’m so sorry to those who do struggle .

However I’m pleased that some do go on to have a fairly “normal” life. Whatever that is anyway.

I’m hoping we’ll get some answers/support soon to try and establish what is going on. I’m thinking of going down the private route to be honest because I can’t bear just waiting.

Thank you again everyone x

My DC is 11 And has high functioning ASD (Asperger's). His biggest cause of anxiety and unhappiness is when the world can't/won't adapt to his needs, however small, and expects him to "Just fit in" with everyone else because his issues aren't immediately visible (He is articulate and bright).

When his needs are met and he feels secure, such as with family, he is happy, confident and funny.

I have autism and I live a pretty normal life. I live with my partner and work full time in a professional role. I don't really have friends other than my work friends and the only time I see people out of work is once every few months when we have a quiz night at colleagues flat. For me, anxiety is the only issue I find with my autism. I don't cope well with change and I struggle to travel anything beyond my normal work/shopping journey. I haven't left the town I live in for over a year.

Hi OP.

I understand you're worried, and I'm not going to pretend it's easy. I am autistic and so is one of my DC.

My son is nearly 8, he is generally a happy little boy. He has a lot of support in place and he loves his school where he is respected , accepted for who his. Educationally he is thriving. On the social side he is very immature and does not have great social skills but he has a few good friends and again, he is happy.

I had a horrible childhood full of abuse and I am NC with my family. I have good friends who are my support network and I have had a good career. I have a nice part time job working for a charity which is very fulfilling, although it doesn't pay much money it fits around my family.

Sometimes things are hard, it's a struggle to get supports in place, and you have to fight the authorities all the way. Sometimes people are judgemental and explaining about my/my child's autism doesn't always bring pleasantness and understanding. Sometimes people are nasty and cruel.

I hate how parents of young children going through the assessment process are presented with the idea of autism being a list of defecits, all about the things they can't do, the milestones they are not meeting, the areas in which they are "behind" their peers. Autism is so much more than that, it's not all about what we can't do. There are many things that we can do, there are many advantages. If we are always being measured against what is "normal" for a neurotypical, then we are always going to fail. Unfortunately there is far too much focus on what is "wrong" with us (according to a neurotypical criteria). There is nothing wrong with us at all. We think in a different way, and we see and feel the world in a different way, but there is nothing wrong with us. We are not flawed, or a problem, or a disease to be cured.

I would advise you to look up the "Neurodiversity" paradigm and movement, and read as much as possible that is written by autistic adults and young people. This is a way of thinking that emphasises the postitives of autism and the value of autistic people as fully functioning, valuable people in their own right, without ignoring the reality of how difficult is for autistic people trying to fit into a neurotypical world.

I wish you all the best on your journey. Check out the National Autistic Society information and find out what support services there are for you locally. If you have a positive attitude towards autism you're little one will be fine!

Watching with interest DD1 was diagnosed with HFA in August just before she turned 4. She's currently in reception and I worry constantly if she'll be happy and able to have a normal life.

Thank you for starting this thread. My DS is nearly 2.5 yrs and has a number of autism 'red flags' and I admit I am struggling with it all and the constant, relentless worry is certainly affecting family life.

And thank you to those who have replied with their own experiences.

It's very normal to have this "what if ...." when you first suspect your child has a disability.

But remember a diagnosis is not a prognosis.

My son has autism and spastic quadriplegic cerebral palsy. He walks and talks and goes to a MS school. He's a swimmer and hoping to soon become a para swimmer (needs to go through classification assessment) and compete nationally.

Yes, things are hard. Yes, there is limitations compared to his peers. But this doesn't make him unhappy.
We focus on what he can do and make sure he accesses things he can. He's given support socially and academically and has had all sorts of various interventions over the years.

A different life doesn't mean an unhappy one.

@youarenotkiddingme I love your post! Good luck to your DS!

Yes, I've got two, with both ADD and ASD and varying degrees of dyspraxia. We don't really use the word 'normal', but they're funny, intelligent, polite and loving, have a few friends, and are doing reasonably well at their MS secondary grammar school. They're quite likely to make it to Uni if they can organise themselves enough.

That's not to say that we don't have bad days. Sometimes school is too much for them. They rarely get invited to parties. Concentration has always been a problem. Some of our friends with children drifted off when they found out. But we have a whole set of new friends with children who also have ASD, with lots of ASD Mums nights out and social things going on.

As other people have pointed out, it depends on your child and your particular set of circumstances, but it certainly doesn't have to be terrible.