The autism thread

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wiggy001

Original Poster:

6,427 posts

261 months

Saturday 5th January 2019
quotequote all
I'm sensing from the other recent thread about the rise in autism that there are a number of people here with experience of autism, and many more that would appreciate somewhere to discuss those experiences and ask questions. So rather than derail the other thread, I thought I'd create this one.

So, my story in brief...

Our first daughter Victoria was born in June 2013 and apart from being an emergency C-Section everything seemed to be normal. She was a little behind in most milestones in the early months, but everyone told us not to worry, all kids develop at different rates etc. She first walked at 18 months for example which, whilst late, isn't completely unusual. She was always such a good baby too, rarely cried, slept through the night from a very early age, never touched anything she shouldn't. People told us we were lucky...

My wife hasn't returned to work since having Victoria so we felt she could do with interaction with other children, so she started pre-school when she was 2, and it was there that her key-worker highlighted that she was behind where she should be. We didn't need telling though. Despite others in the family saying all kids are different, we knew she was behind other kids of her age, wasn't communicating as they were, and was basically in her own little world. So we set off on the path to get a diagnosis.

Three years later (she was 5 in June), and yesterday we had it confirmed that she does indeed have autism. Despite being something we have known for a while in our hearts, it was a shock to see it written in black and white on the doctor's screen yesterday.

A couple of things we've learned along the journey so far:

- The process to get a diagnosis is long and tedious, and we weren't really told what would happen after each stage, which turned out to be roughly:

1. Initial assessment
2. Second assessment after 6 months to see if she was developing
3. Genetic testing - I thought this was to identify/rule out other genetic issues, but was told yesterday that 20% of autism cases can be diagnosed with genetic testing. It may be in the future that more cases can be as the testing improves
4. Speech, language and communications assessments - I thought these were simply as described but found out yesterday that these followed a proscribed and well used method for diagnosing autism
5. The "final assessment" - we believed this to be a final assessment of Victoria by an expert in autism in order to come up with a diagnosis. Actually, it was a meeting with said expert to discuss the diagnosis that he, with a panel of other professionals) came up with a few weeks ago.

The paediatrician we saw yesterday was very good, explained everything well and will be sending us and Victoria's school and written confirmation of the diagnosis shortly.

What we're not really sure of, and this may sound strange, but what happens next?

We know that we want to learn as much about the condition in order to give her the best start in life we can. We have some leaflets from a local support group and with links to various autism charities etc so I guess we start there. We also need to speak to the school as I believe this now means they can get extra funding to give her the extra support she needs.

FWIW Victoria is the sweetest, funniest little girl (biased much?). She is so popular in school and although shows many of the traits of autism (lack of eye contact, struggles to talk sometimes, hand-flapping/rocking) she also does things that amaze me and are not what I'd expect from someone with autism (eg performing on stage at a theatre with her dance class).

18 months ago our second daughter (Emily) was born. We are currently experiencing things for the first time and feel like new parents in some ways... we never had "the terrible twos" with Victoria and Emily is into everything, just like a "normal" 18 month old.

Anyway, that's our story in brief. I'd appreciate any thoughts on those first steps we should be taking now, and any advice from people that have trodden the path we are on.

TIA

ETA I know some are cynical about autism, believe it is just an excuse for lazy parents or benefits. Feel free to read this thread and learn but this isn't the place to share that cynicism thanks.

Edited by wiggy001 on Saturday 5th January 19:45

Hammer67

5,410 posts

174 months

Saturday 5th January 2019
quotequote all
You have my sympathy, as does anyone who`s child is diagnosed with autism.

My experience can be read about in a thread I started several years ago.

Be aware my thread does not make happy reading. In short, my lad is severely autistic and is now 22.
Next month he is due to move out of the family home into a permanent adult residential arrangement.
Finally after 20 years my wife and I can try and live a normal life.

Very interested in how this thread develops and will offer advice when and where I can.

H67.


sparkyhx

3,979 posts

194 months

Saturday 5th January 2019
quotequote all
Firstly I am autistic and so are both my kids. I with my wife (and another parent) do training and awareness course for the public (parents, family members etc) and 'caring' professions (teachers, social workers, therapists, childrens services, adoption and fostering) and increasingly branching into the corporate arena and HR departments and diversity initiatives. My wife is also a psychotherapist who specialises in people on the autistic spectrum and people living with people on the spectrum.

My son now 25 and doing teacher training has Aspergers and ADHD, my daughter has Aspergers, Visual Stress, PDA, Hypermobility and still doing her A levels. She spent 3 years out of the mainstream education.

tough time for you and tough times ahead I fear. It is getting better and will continue to do so, but there are still many hurdles to jump and a lot of acceptance to build and a lot of fighting.

where in the country are you? Local authority education and NHS services vary enormously, but be prepared to fight.

Along with autism come a higher prevalence of number of co-morbid 'conditions' which is useful to know about and be aware of just in case they crop up as she is growing up. e.g. ADHD/ADD, PDA, Dyspraxia, Dyslexia, Dyscalculia, OCD, Eating disorders (Anorexia) Irlen syndrome/visual stress, Hypermobility and Ehlers Danlos, as well as Alexythimia, interoception, sensory issues and overload, executive functioning issues

Your daughter is young to be diagnosed, which usually means the autism is quite profound. But I don't get the sense she is non-verbal or having co-morbid learning difficulties? In our experience girls tend to start having significant difficulties in their early teens when inter-peer relationships start to get more complex

Both my kids were in their teens before being diagnosed, but looking back at some of the early years stuff, the signs were already there but were dismissed as quirky or simply overlooked at the time.


Of course many good things can also come
- honest
- wicked sense of humour
- higher than average intelligence
- creative artistic and/or science
- loyal
- straight talking

Good luck - only a PM away if you want more info.





Edited by sparkyhx on Saturday 5th January 21:11

LosingGrip

7,467 posts

149 months

Saturday 5th January 2019
quotequote all
Hammer67 said:
You have my sympathy, as does anyone who`s child is diagnosed with autism.

My experience can be read about in a thread I started several years ago.

Be aware my thread does not make happy reading. In short, my lad is severely autistic and is now 22.
Next month he is due to move out of the family home into a permanent adult residential arrangement.
Finally after 20 years my wife and I can try and live a normal life.

Very interested in how this thread develops and will offer advice when and where I can.

H67.
My brother is severely disabled, 24/7 care, non verbal etc and is a similar age to your son. He moved out last year to his own place with carers. It has been lovely to see my parents enjoy their lives and not have everything revolve around him. It sounds bad when I say enjoy their lives to those not in a similar situation.

I hope that you and your wife enjoy it. He'll be in a good place as well (I think I remember your thread).

My sister's have autism. They are both at uni and isn't that severe, but when they both got the report it made a lot of sense.

When I was younger my mum struggled with me, she took me to the doctors but nothing was ever diagnosed, but having read my sister's reports...I clearly have it as well. I struggle with certain things. But have my own ways of dealing with situations I don't like.

oldbanger

4,309 posts

228 months

Saturday 5th January 2019
quotequote all
I have two girls aged 11 and 14. My eldest was diagnosed with Aspergers two years ago and my youngest starts the assessment process in 2 weeks time, after quite a lengthy wait for the referral to go through.

Their behaviour is frequently challenging but I have found therapeutic parenting techniques have been really helpful, so things are overall much better than they used to be.

Edited by oldbanger on Sunday 6th January 11:27

wiggy001

Original Poster:

6,427 posts

261 months

Sunday 6th January 2019
quotequote all
Many thanks for these initial posts - as expected the condition is a lot more common that you would believe. I've been surprised at the number of people I've spoken to recently that have autism, care for someone with autism or know someone with the condition.

We live near Swanley in Kent so we are under the Dartford and Gravesham NHS (although the meeting to discuss the diagnosis on Friday was in Coxheath, near Maidstone). We was show a "scale" which placed Victoria on the line between "moderate" and "severe" on this scale. Over the course of the assessment questionnaires were completed by the speech and language professionals, her teachers (at the end of her reception year last summer) and us. Interestingly the scoring suggested that we saw the autism as less severe than the professionals. I guess that might be us trying to think the best of every situation that was asked about.

Having read a lot of stories on here and elsewhere, Victoria's autism seems extremely mild compared to others. Part of the reason for her early diagnosis is that we pushed hard for the referral at a young age. Her pre-school key worker has a son with autism so was very aware of the signs and we took the view that we wanted to know as much as possible as soon as possible to give her the best support we could. We were also very aware of how long the process takes, so didn't want to wait.

Victoria's speech is very good - she can say words and sentences clearly and reads books aloud very well. Where she struggles is with conversation; more often that not she will struggle to get words that she wants to say out (early on I thought it might be a stammer). She can then get stressed and frustrated because of this and then her behaviour may deteriorate to the point of trying to hurt us (scratching, hitting, pushing etc). We are learning how to diffuse these situations but she has taken this out on her little sister on a couple of occasions.

Victoria also has an awesome memory. She could recite the alphabet before most of her peers and from a young age would appear to read books. I say "appear" because she would "read" the billy goats gruff (for example) by remembering the words to say on each page rather than reading the words. That said, the school have done an excellent job with her reading and she is now able to read better than many of her peers, and can sound out new words and quickly remembers them if we correct her. Her class are currently being given laminated lists of words to learn as part of their "homework" - Victoria reads the list out first time before she's even left the classroom most times.

So all in all and compared to others we currently have it easy. That doesn't mean it is easy of course. My mum has very steep stairs in her Victoria cottage so instinctively goes down the first in front of Victoria - this is wrong! Victoria must always walk up and down stairs in front of you. It's her thing. In fact, most things we do have to be done in a certain order or she becomes stressed, tearful, argumentative and violent. I am going to Belfast for a couple of days tomorrow (something I do semi-regularly for work). I told Victoria about this this morning. To most people that seems normal, but it has taken a long time for us to work out the "optimum" time to tell her when something new is happening (school trip, staying with family, family visiting etc). If I had told her yesterday she would keep talking about it and become anxious. If change comes as a surprise it greatly stresses her out. A day and a half is about the right amount of time for her... something so simple has taken years to understand and get right...

We are also well aware that autism isn't "static" and we will face challenges as she grows older. I guess that's why I started this thread, to share those experiences. It's also quite cathartic for me to put things down.



Hammer67

5,410 posts

174 months

Sunday 6th January 2019
quotequote all
You`re not a million miles from me then wiggy, I'm on the Kent coast in Romney Marsh.

Some of your daughters traits are very, very similar to those of my lad.

The reading of books is virtually identical, he is still reading the same books now aged 22. He has never progressed from them ~ The BFG, Hungry Caterpillar, Thomas the Tank etc.

Also the inability to accept change in routine and the shows of violence. We have to adhere to the same things day in, day out, any change has to be carefully planned and introduced slowly.

Now our 2 main issues with our lad are transitions from one activity to another and his absolute obsession with his PC where he will continually watch children`s TV on YouTube.

We bought him his own PC when he was doing well in his last but one school and initially it was great. Now, it`s a millstone, it's all he wants to do and getting him away from it is a nightmare.

To me it sounds like your daughter may have got to the age/stage where my lads development pretty much stopped.

He is now basically an adult with the mental age of, probably a 5/6/7 year old.

He has absolutely no concept of empathy, personal safety, who and who not to talk to, when and when not to be fully clothed and many, many other issues that means he requires 24/7 supervision and always will.

I fear you may be following in my footsteps wiggy, I hope not, I really do.

Butter Face

29,029 posts

150 months

Sunday 6th January 2019
quotequote all
Wiggy, thanks for the link in the other thread and reading your story and others does help get my head around this whole situation.

As it stands we don't quite know whats happening but reading about Victoria (the speech, echolalia, unable to converse etc) really does strike home a bit to our daughter. We're just waiting now to hear what happens next ref actually speaking to someone about if we are indeed looking at Autism and what we do from there but yours (and any others) input would be interesting.

Butter Face said:
I'm not normally one to join such discussions as TBH Autism has passed me by my whole life, but it has recently come to the fore in discussions with my daughters Nursery.

Background: Daughter started Pre-school in Sept 18, just turned 3 years old, she has hypermobility in her ankles and hips so only started walking at 2.5 years old, still now she is a bit wobbly but has mostly got it nailed. She is also very tall at 114cm and wears 6 year old clothes so lots of people think she is much older than she is.

Pre-school spoke to us about 6 weeks after she started that they were concerned about her speech, that she doesn't really converse as they would expect a 3 year old to do. My wife and I (first child, never really spent much time around other children) hadn't really thought there was an issue, but after being told about it, it became quite apparent. The main issue is Echolalia, she doesn't answer (or wasn't answering) with responses, just simply repeating what was asked.

We have worked very hard over the last few months to try and get her communication levels up but it seems she does struggle still and will 'zone out' when you try and eleicit a response from her, we are waiting for SLT to assess her, but have been told it may be Autism, but not to worry etc etc. She has also been referred for genetic testing (which we're not sure what it does/is for)

Any input appreciated, we're a bit blind going into this whole situation TBH.

sparkyhx

3,979 posts

194 months

Sunday 6th January 2019
quotequote all
wiggy001 said:
Many thanks for these initial posts - as expected the condition is a lot more common that you would believe. I've been surprised at the number of people I've spoken to recently that have autism, care for someone with autism or know someone with the condition.

We live near Swanley in Kent so we are under the Dartford and Gravesham NHS (although the meeting to discuss the diagnosis on Friday was in Coxheath, near Maidstone). We was show a "scale" which placed Victoria on the line between "moderate" and "severe" on this scale. Over the course of the assessment questionnaires were completed by the speech and language professionals, her teachers (at the end of her reception year last summer) and us. Interestingly the scoring suggested that we saw the autism as less severe than the professionals. I guess that might be us trying to think the best of every situation that was asked about.

Having read a lot of stories on here and elsewhere, Victoria's autism seems extremely mild compared to others. Part of the reason for her early diagnosis is that we pushed hard for the referral at a young age. Her pre-school key worker has a son with autism so was very aware of the signs and we took the view that we wanted to know as much as possible as soon as possible to give her the best support we could. We were also very aware of how long the process takes, so didn't want to wait.

Victoria's speech is very good - she can say words and sentences clearly and reads books aloud very well. Where she struggles is with conversation; more often that not she will struggle to get words that she wants to say out (early on I thought it might be a stammer). She can then get stressed and frustrated because of this and then her behaviour may deteriorate to the point of trying to hurt us (scratching, hitting, pushing etc). We are learning how to diffuse these situations but she has taken this out on her little sister on a couple of occasions.

Victoria also has an awesome memory. She could recite the alphabet before most of her peers and from a young age would appear to read books. I say "appear" because she would "read" the billy goats gruff (for example) by remembering the words to say on each page rather than reading the words. That said, the school have done an excellent job with her reading and she is now able to read better than many of her peers, and can sound out new words and quickly remembers them if we correct her. Her class are currently being given laminated lists of words to learn as part of their "homework" - Victoria reads the list out first time before she's even left the classroom most times.

So all in all and compared to others we currently have it easy. That doesn't mean it is easy of course. My mum has very steep stairs in her Victoria cottage so instinctively goes down the first in front of Victoria - this is wrong! Victoria must always walk up and down stairs in front of you. It's her thing. In fact, most things we do have to be done in a certain order or she becomes stressed, tearful, argumentative and violent. I am going to Belfast for a couple of days tomorrow (something I do semi-regularly for work). I told Victoria about this this morning. To most people that seems normal, but it has taken a long time for us to work out the "optimum" time to tell her when something new is happening (school trip, staying with family, family visiting etc). If I had told her yesterday she would keep talking about it and become anxious. If change comes as a surprise it greatly stresses her out. A day and a half is about the right amount of time for her... something so simple has taken years to understand and get right...

We are also well aware that autism isn't "static" and we will face challenges as she grows older. I guess that's why I started this thread, to share those experiences. It's also quite cathartic for me to put things down.
Good luck, hopefully having advanced warning, so to say, will mean you are primed and ready for other things as they come at you.
If I have any advice
- fight all the way, NHS, School etc
- watch out for the co-morbid things I pointed out and get the help (see point 1)
- its early days for her, she may develop into an intelligent funny young women with autism, only time will tell. She is young and gets frustrated but as she develops and learns strategies with your help she can 'improve' and take her place in the world that by then may be ready to accept her. However in some instances she may not and that's hard.
- watch out for the change to senior school and puberty, that's when things can get messy for girls, bullying and being ostracised is a serious issue.

https://www.ted.com/talks/rosie_king_how_autism_fr...


Good luck

AMLK

407 posts

175 months

Monday 7th January 2019
quotequote all
Thank you for this thread, I think there are a few people on here with children in the spectrum and I personally appreciate the support of others in similar situation.

Our story started when my daughter was in P5 (Scotland so equivalent to P4 in England). I was called in to see the head teacher (who previously worked at a special needs school) who wanted to discuss problems my daughter had been having - mostly issues with friends and some behavioural problems such as not waiting her turn. She handled things very well and at the end of the meeting gently suggested our daughter may have autistic traits. This was my light bulb moment. My cousin's son had just been diagnosed as having ASD and our kids were very similar. It also made sense of all times why I wondered why our daughter reacted differently to most kids.

Roll on a very long battle with our health authority to get her assessed. Finally and the end of S1 her assessments were completed with a final diagnosis of high functioning autism. To be honest it was a relief for us all. My daughter was actually really pleased, she said she always knew she was different and the diagnosis explained why.

Our journey has not been an easy one unfortunately, but we are getting there. I have done lots of research and attended several training courses put on by local charities to understand more about the condition and learn coping mechanisms. This has been invaluable in managing my daughters behaviour and teaching her to cope with struggles.

Since P6 my daughter has struggled with depression and suicidal tendencies, OCD and anorexia and these are still major problems. She has had multiple sessions with CAMHS which hasn't really helped - communication is not her thing unsurprisingly! But they still refuse to allow her to given medication. I have recently done a suicide awareness course so I can keep an eye on things and better judge when she may be spiralling down that course.

School has been very up and down for her. We chose for her to go to a secondary school out of county as it offered more support for her. Thank goodness we did, they have been very supportive and accommodating. Despite this we did go through a long period of school refusal, but the school just praised her when she made it in and never hassled us about it. Now she is in S3 (just turned 14 yrs) and is just doing chosen subjects in graded classes she is much more settled and her attendance is back in to the 90% region. We still have an issue getting homework done but you can't have everything!

Our newest battle is she has just been diagnosed with Adolescent Idiopathic Scoliosis and we are waiting to see a specialist regarding this. My biggest fear is that she will require surgery or to wear a full body brace as I think we will have major issues with her accepting either of those options.

My biggest advice for anyone going through/just received diagnosis is to attended courses, learn as much as you can. The better you understand the condition the better your coping strategies are. Accept support - families, friends, charities. Talk about it, the more people know the better they understand.

sparkyhx

3,979 posts

194 months

Monday 7th January 2019
quotequote all
I don't mean this to sound wrong, but all those people with Kids on the spectrum, have you asked yourself if you are? Its largely hereditary, and since diagnosis was only official since 1994 and people learn coping mechanisms, many people are out there unaware they to are also on the spectrum.


sparkyhx

3,979 posts

194 months

Monday 7th January 2019
quotequote all
An absolute horror story of when Autism isn't diagnosed. You may shrug this off as an extreme, and yes it is, but at a lower level this is happening still on daily basis.

https://www.youtube.com/watch?v=cF2dhWWUyQ4

NormalWisdom

2,133 posts

149 months

Monday 7th January 2019
quotequote all
Thanks for starting this thread Wiggy - I feel it might become one of my most visited this year!

AMLK

407 posts

175 months

Monday 7th January 2019
quotequote all
sparkyhx said:
I don't mean this to sound wrong, but all those people with Kids on the spectrum, have you asked yourself if you are? Its largely hereditary, and since diagnosis was only official since 1994 and people learn coping mechanisms, many people are out there unaware they to are also on the spectrum.
In our family I would definitely say it's mainly hereditary. I wouldn't say either of us parents are (though both of us are quite anti-social out of choice!). On my side of the family I have 2 cousin's whose son's are (one high functioning - 15yrs, one low-11yrs). I suspect my sister is high functioning but wouldn't ever go down the diagnostic route. On my husband's side our 2 nephews are, one high functioning (9yrs) and the other only just started assessments (4yrs).

oldbanger

4,309 posts

228 months

Monday 7th January 2019
quotequote all
sparkyhx said:
I don't mean this to sound wrong, but all those people with Kids on the spectrum, have you asked yourself if you are? Its largely hereditary, and since diagnosis was only official since 1994 and people learn coping mechanisms, many people are out there unaware they to are also on the spectrum.
My kids are actually my bio nieces. Their bio mum was strikingly similar in behaviour to my youngest (more pda type difficulties than classic Asperger)

I now suspect my dad is also on the spectrum, he’s a very sensitive and rigid man.

As for me, I deffo have traits but I don’t think I am fully on the spectrum

irish boy

3,193 posts

226 months

Monday 7th January 2019
quotequote all
Good to start a thread wiggy. Our daughter is 2.5 and due to taking a rare form of epilepsy at 6 months old has possibly developed some sort of autism. She is being tested at the minute. Like your daughter she is warm, bright and intelligent so we know we are not on the severe end, but certain situations she cannot cope with. If we get a diagnosis we'll deal with it, in the mean time we have a specialist working with her 2 mornings a week, which isn't cheap but has seen her progress rocket.

If you fancy a coffee in Belfast drop me a pm.

S100HP

12,336 posts

157 months

Monday 7th January 2019
quotequote all
I'm 99% sure my son has Aspergers. I've a limited understanding but my other half used to be a support worker and has done the relevant training and agrees. He's classed as SEN at school and seems to struggle emotionally, especially with social situations and changes to routine. It is manageable which is why we've not gone down the route of diagnosis yet, but it seems pretty obvious when you read the online stuff. He's also insanely clever. Like others in this thread he can read words easily, loves maths and space and can put most adults to shame with his knowledge.

He had a fairly traumatic entrance into the world, a long labor with an emergency c section as his heart rate was dropping. I've always wondered if this might have something to do with it.

I don't know what the future holds for him or us. Some days I think he'll be fine, others I worry he'll need constant support.

Is there any benefit in having him labeled?

coetzeeh

2,519 posts

226 months

Monday 7th January 2019
quotequote all
S100HP said:
I'm 99% sure my son has Aspergers. I've a limited understanding but my other half used to be a support worker and has done the relevant training and agrees. He's classed as SEN at school and seems to struggle emotionally, especially with social situations and changes to routine. It is manageable which is why we've not gone down the route of diagnosis yet, but it seems pretty obvious when you read the online stuff. He's also insanely clever. Like others in this thread he can read words easily, loves maths and space and can put most adults to shame with his knowledge.

He had a fairly traumatic entrance into the world, a long labor with an emergency c section as his heart rate was dropping. I've always wondered if this might have something to do with it.

I don't know what the future holds for him or us. Some days I think he'll be fine, others I worry he'll need constant support.

Is there any benefit in having him labeled?
The important thing is to ensure he gets the best support from as early on as possible. It will help him cope with the stressful situations so much better. I would strongly recommend a speech and language therapist who will also be able to coach your son and help understand life as neuro tipycals see it.



SkemJazzer

221 posts

213 months

Monday 7th January 2019
quotequote all
I think that it’s a great idea that you’ve started this thread.

My son has just turned 5 and has been diagnosed. As others have experienced, it took nursery to highlight that he may be on the spectrum. His learning was delayed along with speech and he had problems with his behaviour. He reacted badly to change and wasn’t good with sharing which led to violent behaviour and almost expulsion.

What we, as parents, have found is that it is a constant battle to get help. A friend of mine has a son who is older than mine with similar problems and he warned me that you have to fight hard to get the right help. He very kindly said to ask him any time I had any questions which is comforting. Knowing that there are people out there facing similar and much worse problem and that there is support is comforting.

My son is a lovely, witty, charming and loving little boy. He started mainstream primary school last autumn which was an incredibly nervy time for us but he has settled very well and is very well know throughout the school (in a good way). He knows everyone’s name, which class they are in or which class they teach, he’s great with numbers and reading but struggles with writing. If he’s interested in what’s he’s doing he’s great, if not forget it. He has a keen interest in trains which is common for children with ASD, he gets obsessed which is again common.

What I have found is that when I talk to people about my son there are a lot of people who think that he’s just a normal child and in a lot of ways he is but it’s the added extras that come with some children with autism that make the difference. When you tell most children no they might kick up a fuss and have a tantrum, tell my son no and handle it badly (maybe you’ve had a long day at work, maybe you’re tired from being up all night) and you face a barrage of abuse followed by attempts to bite, kick, punch, maybe have toys launched at your head etc. My partner has scars all over her arms from where he has pinched her and cut her. I suffer badly in that when he has a meltdown and I have to restrain him it can knock me emotionally flat for days.

Some friends thought that he was just a normal child but the more I tell them about his behaviour the more they understand how ASD affects both the child and the parents. What I now understand is that rest of the world isn’t going to make allowances for his behaviour so it is up to us as parents to understand him more and learn as much as we can about autism to provide him with the tools to cope with it and use coping mechanisms to help reduce the impact of any undesirable behaviour.

I have had to change my life to help him. If I’m calm with him he reacts so much better than if you raise your voice. A change of tone will set him off. I moved my job to closer to home, I have reduced my drinking so that I don’t have a grumpy hangover head on and turn a small situation into a meltdown. I know people will say that I’m being soft but, believe me, I’ve done the firm strict shouty thing and it does nothing, doesn’t help at all, just makes things a million times worse.

I hope that he grows up into a high functioning member of society, I think he will but I realise that some of his traits that are cute now, such as just walking up to strangers and asking them how old their dog is or where they live, would just be strange if he continues them into later years.

It’s been a struggle for me and especially my partner because, as has been mentioned earlier in the thread, the condition can be passed down and it appears that it has come from me. We have been on courses and talked about all sorts of reactions , behaviour and so on and my partner keeps on saying “That’s exactly like you”. It’s caused me to look at myself and how I behave and how that has affected me from an early age. I can’t complain to much, I’ve got by but I’ve also suffered a lot of pain. The benefit on more awareness of autism is that we understand more, can help people more and hopefully my son will have a happier life than I have had because of the increased understanding. I may look into a diagnosis but I think I’m a bit old now for anything useful to come from it.

He’s back to school tomorrow and we’ve had a week of bed wetting and meltdowns, all caused by anxiety. Hopefully things will be back to normal by the end of the week.

That’s quite a ramble from me, I normally don’t talk about things but thought it might help to share.

sparkyhx

3,979 posts

194 months

Monday 7th January 2019
quotequote all
S100HP said:
He had a fairly traumatic entrance into the world, a long labor with an emergency c section as his heart rate was dropping. I've always wondered if this might have something to do with it.
Ditto my son, I don't wonder cos I also have it, so that covers the genetic angle.