Autistic son

I have just seen this thread and am so glad things are betting better.
 
Been a few months since I posted on here. Mid October I suffered what I think was a nervous/mental breakdown of sorts and was signed off work with Anxiety and Stress. Fast forward to now and I've had several counselling sessions, meds and I'm looking to a phased return back to work in the next couple of weeks. Since then Katy is just as she was. No real development change apart from she's now decided to start spitting out her drinks everywhere :/
Our youngest Grace was diagnosed last week. She needs more help then Katy did at her age. She really is sensory overload and will just sit there flicking, spinning and scratching everything. She's also a terrible sleeper and is currently very disgruntled and has a hell of a temper on her.
Truth be told the past couple of months have been extremely hard work and challenging. Having 2 being on the more severe side of Autism is bloody testing and takes a lot of energy and patience. I have the deepest respect for anyone that has to deal with disabilities no matter what the level.

Biggest problem we currently have is housing. We live in a small 3 bed new build and we desperately need a 4th bedroom. Our Maddie has to share with Grace and frequently gets no sleep as Grace will be awake for hours at a time so it ends up being musical beds.
Issues we have is we can't stretch to a 4 bed house on our budget. We are currently in the process of information gathering as to what help and support we may be able to get in regards to housing. My wife is going to speak to our LA this week and also get a letter from the kiddiespinks doc to advise that we need a 4 bedroom house.

If anyone can help or have any information on housing or has been through something similar I'd really appreciate advice. We have no idea what help we could get.
 
My son is autistic. High functioning, what used to be called aspergers. This is strangely enough, a difficult thing because this high functioning autism isn't easily identifiable, it can be hard to recognise,and diagnose.
We spent years getting assessments from various medical professionals. None were willing to commit to an official diagnosis, so he couldn't get any real help at school.
Eventually he got an official diagnosis so we were then able to get a statement which forces the local council to take measures to help.
But that still wasn't as easy as it should be. We had to fight hard to get anything. The authority resisted and rejected every step of the way. You have to be persistent to the point of aggressive at times.
His school were great, but the council would provide help, then when he improved, they would withdraw funding. So he'd regress dramatically. Then we'd have to re apply and go through months of chasing all over again.
Eventually we had to move him from a mainstream school which we loved, to a school that had a specialist division.
It was the only way to avoid the council from withdrawing help. But our application was initially rejected. We had to put together a case that proved the council hadn't properly assessed him, which they hadn't.
I think because of limited funding, the default is to reject all applications. Only the persistent parents get to actually receive any help.
My son is in his last year of primary school, so we have to pray that our choice of secondary school is accepted. If it's not, we'll be fighting all over again to get him where he needs to be.
He is not typical of autism. He is very empathetic, makes lots of eye contact.
It goes to show that there are no standard symptoms, it can be different depending on the person.
Once he got the correct schooling, he has shown how intelligent and artistic he is. But it only came out after he was diagnosed and treated appropriately.
He doesn't interact like you would expect. If he doesn't understand instruction, he won't make it known. He'll retreat and not seek help. A teacher who doesn't understand autism will see this as wilful disobedience. When it's actually just him seeing the world differently. He has all the same emotions as everyone else, but doesn't always show them in the same way. Any kind of failure is devastating for him, he feels inadequate a lot of the time. When he was younger he was prone to screaming tantrums. Now he's a bit older, he'll disappear and cry quietly if he's upset. He doesn't want to upset his parents.
Traditional discipline proved to be totally disastrous. It takes a different approach. Once you understand how an autistic mind works, things get much easier.
Local authority were very obstructive with help. We started legal action againsed them. They backed down. Only pro active, let's face it, pushy parents get the help they are entitled to. Shame it has to be that way.
 
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Been a few months since I posted on here. Mid October I suffered what I think was a nervous/mental breakdown of sorts and was signed off work with Anxiety and Stress. Fast forward to now and I've had several counselling sessions, meds and I'm looking to a phased return back to work in the next couple of weeks. Since then Katy is just as she was. No real development change apart from she's now decided to start spitting out her drinks everywhere :/
Our youngest Grace was diagnosed last week. She needs more help then Katy did at her age. She really is sensory overload and will just sit there flicking, spinning and scratching everything. She's also a terrible sleeper and is currently very disgruntled and has a hell of a temper on her.
Truth be told the past couple of months have been extremely hard work and challenging. Having 2 being on the more severe side of Autism is bloody testing and takes a lot of energy and patience. I have the deepest respect for anyone that has to deal with disabilities no matter what the level.

Biggest problem we currently have is housing. We live in a small 3 bed new build and we desperately need a 4th bedroom. Our Maddie has to share with Grace and frequently gets no sleep as Grace will be awake for hours at a time so it ends up being musical beds.
Issues we have is we can't stretch to a 4 bed house on our budget. We are currently in the process of information gathering as to what help and support we may be able to get in regards to housing. My wife is going to speak to our LA this week and also get a letter from the kiddiespinks doc to advise that we need a 4 bedroom house.

If anyone can help or have any information on housing or has been through something similar I'd really appreciate advice. We have no idea what help we could get.

Do you get cash from gov? That might help. We get 400 a month for my lad and he seems less severe

All the best mate. Me and my wife ate separated now so I know what you mean about stress
 
Do you get cash from gov? That might help. We get 400 a month for my lad and he seems less severe

All the best mate. Me and my wife ate separated now so I know what you mean about stress

Yeah we get DLA and carers allowance. I don't think these are taken into account for mortgage applications though. Based on my salary we just can't afford a bigger 4 bed house mortgage wise.
I've been information gathering today and from advice given our best bet is to get in touch with our social services and see what our options are. Because we have 2 children classed as disabled the properties that might be suitable aren't the ones that ever get actually advertised on housing association websites and you have to go behind the scenes so to speak.

Once I get definitive information on eligiblity and options I'll update on here. It might be of use to others :)
 
Potentially could be ok on the bigger mortgage front. I spoke to NatWest (Our current lender) this morning via online chat and they do take DLA into account so this means we could probably borrow the amount needed for the houses we had a browse at. Rough estimates show it would be around £220 more a month which we can comfortably afford so it's good news really. We do need a bigger house asap. We have spotted a huge Bungalow with another floor just round the corner from us. The layout is such we could convert a room downstairs into a sensory room. There's also a big conservatory for the kids to have their toys etc. Besides a lick of paint that's needed it would be perfect. Anyway I'm getting way ahead of myself here. It's just nice to know we can potentially move now without having to ask for help as such.
 
You made it work, well done.
 
Been a few months since I posted on here. Mid October I suffered what I think was a nervous/mental breakdown of sorts and was signed off work with Anxiety and Stress. Fast forward to now and I've had several counselling sessions, meds and I'm looking to a phased return back to work in the next couple of weeks. Since then Katy is just as she was. No real development change apart from she's now decided to start spitting out her drinks everywhere :/
Our youngest Grace was diagnosed last week. She needs more help then Katy did at her age. She really is sensory overload and will just sit there flicking, spinning and scratching everything. She's also a terrible sleeper and is currently very disgruntled and has a hell of a temper on her.
Truth be told the past couple of months have been extremely hard work and challenging. Having 2 being on the more severe side of Autism is bloody testing and takes a lot of energy and patience. I have the deepest respect for anyone that has to deal with disabilities no matter what the level.

Biggest problem we currently have is housing. We live in a small 3 bed new build and we desperately need a 4th bedroom. Our Maddie has to share with Grace and frequently gets no sleep as Grace will be awake for hours at a time so it ends up being musical beds.
Issues we have is we can't stretch to a 4 bed house on our budget. We are currently in the process of information gathering as to what help and support we may be able to get in regards to housing. My wife is going to speak to our LA this week and also get a letter from the kiddiespinks doc to advise that we need a 4 bedroom house.

If anyone can help or have any information on housing or has been through something similar I'd really appreciate advice. We have no idea what help we could get.


I have just read through this thread, and your situation really resonated with me.

As a bit of background I have 3 children, both my daughters are ASD, severe/complex end of the spectrum. My 8 year old daughter is also ADHD and my 6 year old daughter is also diagnosed with global development delay, both are limited verbally, unable to dress themselves, not toilet trained etc.... My eldest lad (10) is, in light of what we know about my daughters, being assessed for high functioning autism (aspergers) he is in mainstream, both my daughters have education plans / statements and attend a school suited for there needs.

I know you have answered further on this point but have you considered an application for a disabled facilities grant? Disabled Facilities Grants - GOV.UK

We live in a 3 bedroom semi, my girls needed separating not just for sleep but as them being together could be potentially dangerous (we had an alarming situation where my eldest had put her mattress on top of my youngest whilst she was in bed asleep). My eldest daughter is also prone to violent outbursts, my youngest is more emotional, but together it can be quite a potent mix and as such we cannot leave them together unsupervised.Me and my wife made a decision to separate them and we slept on a pull out couch in our living room, which we did for 18 months. Luckily we have regular contact with an OT from our local council. She has been great and has helped us source many items such as harnesses for our car, buggy, even a special potty thing and also a few minor adaptations to the house to make it safer.

Due to the need for my girls to be separated, the OT did an application for a DFG to get an extra bedroom to be added to our property. The process took 14 months but me and my wife no longer have to sleep on a sofa in our living room:). This adaptation is not means tested, and i believe it allows a budget of up to 35k. The only condition is if you sell your property within 5 years of completion you will have to pay the grant back. Not sure if you have access to an OT? if not then either your local family support officer will be able to assist and contact the council and ask for an OT assessment. Or, failing that the rainbow centre (autistic society) should also be able to point you in the right direction. All applications will be considered and the key criteria is to be able to show that there will be a significant benefit for the child. Whilst our grant was for a bedroom when i researched I found grants had been given for numerous things including sensory rooms.

If you need anymore info mate, just let me know, I will do my best to assist

cheers
 
@chopples

Thanks for sharing and yes reading about your situation it is remarkably similar to ours besides the age differences and our eldest daughter is fine. We have read up on the grants but there's a couple of reasons why it isn't really suited to us where we are at the moment. Firstly we are leasehold and help to buy so we really want to get moved and get the loan paid off. Our house is really unsuited for any kind of extension with the way it's built, where it's situated and basically there isn't any room for anything that would be decent enough for an extra room.

We are currently just trying to ride it out for a couple more years. We can afford to move in regards to the higher mortgage payments a bigger house will bring, but we just can't afford the initial deposit. With our budget we would be around 5k shy and we really do not want to borrow it off family with the way our whole family relates to each other. That's another story though.

One option is to move to a house within our budget and deposit range that only has 3 rooms and then get a grant but that's still a lengthy job time wise with all the pieces that are in play there.

We will see what happens.
 
@addyb Ahhh i see mate, that does complicate things somewhat. I would still advise getting an OT assessment done, whilst your property may not be suitable they could possibly have ideas which could make things a little easier in the short term, not just in terms of sleeping arrangements but other areas around your house/car. This could make things a bit more bearable thus allowing the breathing space to be able to focus on the long term plan.


cheers
 
I actually just had a look at this thread tonight. I think curious on the thought of this condition. I say condition as I don't think its an illness to be cured. I myself am meant to be going to the drs next week to start getting tested for Aspergers at 38 years- I worry about it and what it will mean for me going forward. Still its caused difficulties for me for years. It good to see support and acceptance for this kind of thing.
 
I actually just had a look at this thread tonight. I think curious on the thought of this condition. I say condition as I don't think its an illness to be cured. I myself am meant to be going to the drs next week to start getting tested for Aspergers at 38 years- I worry about it and what it will mean for me going forward. Still its caused difficulties for me for years. It good to see support and acceptance for this kind of thing.
Hi Paul, not checked this thread in a while but your post caught my eye as I'm the same age as you, have come to accept I'm probably undiagnosed aspergers. I've learnt a great deal going through the process for my 13 Yr old son, who is the mirror image of me at that age which I think equips me quite well for dealing with him (he was diagnosed last year after a 5-6 year battle to get him the help he needs)

Out of interest, what spurred you to get assessed? What's the process, do you just go see your doctor?

Do you want to know for any particular reason?

No problem if you don't want discuss or would rather do it via pm. It seems a mirror of my own situation, so just curious really.
 
Hi Paul, not checked this thread in a while but your post caught my eye as I'm the same age as you, have come to accept I'm probably undiagnosed aspergers. I've learnt a great deal going through the process for my 13 Yr old son, who is the mirror image of me at that age which I think equips me quite well for dealing with him (he was diagnosed last year after a 5-6 year battle to get him the help he needs)

Out of interest, what spurred you to get assessed? What's the process, do you just go see your doctor?

Do you want to know for any particular reason?

No problem if you don't want discuss or would rather do it via pm. It seems a mirror of my own situation, so just curious really.

I am a mental health nurse but i suffer mental illness, anxiety, depression, OCD. I have held difficulties in the past [i guess relationships at work and family etc]. I used to think it was due to my anxiety and ocd and my be hypersensitivity? It resulted in me having to [or feeling i have to] move jobs a lot and now with my wife and i not livening together.

My mother used to work with learning difficulties. She has long thought i suffer this and observed as a child psychology were involved but little was done and never pressed ahead with "i guess stigma and little knowledge of it".

Today is a different world. We are more open. If i do suffer it i may be able to get help. Things may be a little easier or persons more understand at work [my manager thinks i suffer it].

I have done online test and it is suggestive i suffer this. I have an appointment at the Dr to ask that assessment be made. My mother and wife will attend as they want to talk to the Dr re issues i have had without me "downplaying them" and to talk of the difficulties i bring to the family unit. For me the issue is if not this then what? Does it just mean i am a D*** at times?

Add to that i guess i fear my implications getting other jobs? How it will be viewed in my line of work? Like, working with people and having difficulties with relationships and communication at times? Its not a wining combination.
 
Thanks for replying, very interesting to read.

I'm self employed so the work thing has never been an issue thankfully. I hate situations of meetings new groups of people, perhaps that contributed to me working for myself so young.

I've often asked myself do I have issues or am I just being a d*ck. I suspect I have many of the issues you mentioned, but not enough to really impact me severely.

Generally I'm quite aware of it all and know when I'm having a black day, yet I know people diagnosed with depression and wouldn't want to compare my down days to what they appear to suffer. That's what made me respond, I'd like to understand it all a bit better and perhaps be better equipped to deal with it.

Best of luck with it all, and I'm very interested to hear how you get on. I think there is more understanding of it all these days although I realise how hard it is for blokes to address it.

I think just accepting it and taking steps to improve is massively important. There must be plenty of people from our generation and older who were never diagnosed, much like dislexic kids were previously assumed to just be naughty.
 
Thanks for replying, very interesting to read.

I'm self employed so the work thing has never been an issue thankfully. I hate situations of meetings new groups of people, perhaps that contributed to me working for myself so young.

I've often asked myself do I have issues or am I just being a d*ck. I suspect I have many of the issues you mentioned, but not enough to really impact me severely.

Generally I'm quite aware of it all and know when I'm having a black day, yet I know people diagnosed with depression and wouldn't want to compare my down days to what they appear to suffer. That's what made me respond, I'd like to understand it all a bit better and perhaps be better equipped to deal with it.

Best of luck with it all, and I'm very interested to hear how you get on. I think there is more understanding of it all these days although I realise how hard it is for blokes to address it.

I think just accepting it and taking steps to improve is massively important. There must be plenty of people from our generation and older who were never diagnosed, much like dislexic kids were previously assumed to just be naughty.

That a really good analogy using dyslexia. In a similar manner I lost loads of school due to “black outs” [epilepsy] and remember being berated for not listening ;-( only in later life did it become apparent and I had help.


You taking about self employed is something that I understand. Just today agin I have said i wished I did as if i were my boss I would be less worried that my “behaviour” would get me in trouble. I am having issue at work at the min and again thinking of running. It’s so tiring.

I am very black and white. I don’t know when it’s my turn to speak and sort of look like I don’t want to listing, I get fixated on things and micro analyse. I am fixated with number and patterns etc and have to manage it all at work it’s hard. Last year I was told I am aggressive. I was deviated as I don’t think I am an was gutted I am upsetting folk.

Anyhow if you need to ask anything let me know. I am acutely aware I may be derailing this thread
 
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Same here, ill message you if that's cool.

The black and white thing is me all over. Again, I think I have many of the traits you mention but not to the point it causes me problems.

I was accused of being aggressive towards an estate agent we were dealing with. From my perspective, they were repeatedly rubbish and eventually I told them so. Nothing more than the facts in very black and white terms. I still don't agree I was aggressive as its not in my nature but accept someone else may have taken it that way.

Anyway, I've sunk a few beers so will leave it at that lol
 
Paul and Tony pm me when it's next convenient. Just wanted a chat about asd and what I think about myself potentially having it. Long story I don't really want to derail this thread from.
 
I'll message tomorrow, this is very much a conversation I'd like to have.

AddyB, read your last few posts, sounds like you are having a very tough time with the kids, hope things improve for you all.
 
Firstly sorry to chime in fellas, but I think what you all are saying probably rings true with a lot of parents. Autism is known to have a strong Genetic basis. When I first attended a meeting for my youngest daughter when she started her school the assistant Head actually ask which of us (me and my wife) where on the spectrum. Moments like this tend to get you thinking.

I wouldn't say I am socially awkward but that I am socially uncomfortable???? You may wonder what the difference is, I will try to explain.

I seem to be a similar age to you guys (40 this year) when I was younger I was offered a lot of freedom by my parents, probably too much freedom, I lived in a pretty rough area, this basically put me in a lot of uncomfortable situations with my peers. I had to condition myself to give the appropriate response. Often when i dealt with these situations I gave a response which was expected rather than that I believed. Over time You get pretty good at this, as such any underlining awkwardness becomes well hidden. Only with maybe some of my closest friends and family do I occasionally let my guard slip. This tends to be in the form of aloofness, passing comments which seem minor in my head but occasionally get the look of shock from others.

There are probably a fair few people undiagnosed who find themselves with a similar mindset. I also believe for some, this feeling of expecting to behave a certain way can manifest itself and lead to other issues.

Diagnosis can be the first step for understanding why you think and feel the way you do.

This was meant be a post of support, I have kind of gone on a tangent, I apologise.

All the best in finding the way which works for you

cheers
 
I think there is a huge genetic component yet to be fully realised. It's quite apparent that some of our members with affected children, demonstrate such traits themselves. Some don't, so i won't be naming names.
 
Apparently so IG- around 80-85% of cases. For me, if i suffer this as i think, I worry a little. I don't know anyone else in my family that has since suffered it and i worry about my daughter of 6, though already i see some behaviour akin to the condition.
 
So our non verbal Katy boo decides to recite some of the alphabet before. Quite an emotional moment is an understatement.

 
So our non verbal Katy boo decides to recite some of the alphabet before. Quite an emotional moment is an understatement.



I guess it’s moments like this when all the stress and worry etc sort of just go for the briefest of moments and you think all the other stuff going on means nothing and is of no real importance
 
An update on my son.

As a reminder he has aspergers and adhd diagnosed since the age of 4.

With a lot of support from me, my wife, the education system and child support services we got him through GCSEs with pretty good results and A levels with outstanding results.

He pretty much had his choice of universities, and picked Chemical Engineering and one if the top Russell Group universities for that subject.

We did worry about him wanting to go to a university that was 150 miles away but he was adamant and we gave in, thinking that he has got to become more independent and that is a fairly safe environment to do that. We called it totally wrong, we thought he would struggle with daily life but it was the academic elements that he struggled with. Not because he couldn’t do them but because he was so lazy and had cruised in the past. Okay many kids, especially boys are lazy but aspergers adds an extra dimension. Where most would be lazy, putting off work, maybe skipping lectures there would eventually come a point where they realised the mess they were in, panic and burn the candle at both ends to deliver - they would also learn from it, maybe not all at once but gradually. Not my son, he seemed to have no concept of consequences and would leave assignments, revision etc. to just hours before the deadline - the thing is, he did not learn and nor did we. Each year we would sit down with him and the department (who were excellent) devise a new plan and reset. And each year it was like groundhog day with resits every year. The infuriating thing is that he would sit the exam and get 4%. We would think that he simply did not comprehend the subject that it was beyond him, but then he would do the resit and get 79%. Looking back much if this was because the resit was over the summer break, he was at home so we would sit on him to do the revision. In the first couple of years we asked him whether he wanted to change subject, change university but he insisted that he wanted to press on. Now it is over he confesses that he hated Chemical Engineering, that it was just on the recommendation of one of his A Level teachers that he chose it, would have preferred Computer Science but didn’t have the courage to admit it.

So five years to do a three year course and each year a repeat of the last. At the end he finished with an ordinary degree, lower than a third. He’d actually done a lot better than that in the credits he had completed, but the main problem is that the university had asked him to step down from the final year group project because it was not fair on the others. This left him with insufficient credits to be awarded anything other than an ordinary degree. We raised this with the department and they agreed that it was unfair so they deferred the award and arranged for him to complete the individual part of the group project at home. Even getting him to do that has been extremely frustrating, again he simply could not see the consequences. But it is in now and if all goes well that will elevate his award to a 2:2 honours.

But since last June I have been so depressed. Of course we have been very supportive and encouraging to my son, but in my mind I’ve been thinking we are real world now, an ordinary degree is hardly better than nothing and most employers won’t even look at a 2:2. On top of that, with his aspergers he won’t interview well so I had little confidence that he would get a nice job and feared that he would end up in a harder environment where he would be bullied.

Now the good news.

Aspergers is very trendy at the moment - make the most of it. Organisations are falling over themselves to recognise aspergers and other mental illnesses with pressure to be inclusive and mentally aware.

We spotted that the Princes Trust were running engineering experiences for young adults not in education or work, not just those with mental illness but that was a big part of their intake. They are linking up with companies to provide one month experiences and because it earns them a ‘mental aware inclusive’ badge companies are falling over themselves to take part. My son got on one these experiences with a big local engineering company expressing an interest in software engineering. There were about 15 on the course and at the beginning (and to my surprise) the company said that at the end they hoped to offer employment to all of them - I thought my son must have misunderstood and didn’t dare to hope. But true to their word they offered employment to all, apprenticeships, funded university places and graduate placements. At first they offered my son a graduate apprenticeship, basically be paid £18k to do a degree whilst working and with all university fees paid. To be honest we were more than happy with this but later they realised he had a degree and changed the offer to a graduate placement on £28k.

He has been their two months now, has his own car, really likes it, doing software engineering which is what he really wanted from the outset and is doing well.

Writing this, I’ve just started crying uncontrollably, which beleive me, as I have aspergers myself I don’t do very often. But the relief is so immense, I was so scared and worried about what would happen to him.

So advice from experience - and bear in mind that everyone is different.

1 - if you are looking at universities make sure it is absolutely what they want to do and are not just doing it because someone told them to do it. Make absolutely sure that it is a subject that they really want to do.
2 - sort of conflicting with (1) but consider location very carefully. Balance their (and your) desire to be independent. Remember that you have supported them up to now and whatever they think they still need that support to a degree. I’d advise steering them towards a university close by so you can easily get to see them or they can come home at weekends if they want. Even consider getting them a car so they can live at home and commute to a local university - talk to the university and they will fall over themselves to provide free on-campus parking.
3 - for now at least, mental illness is very trendy and companies are falling over themsleves to prove their mental-aware credentials. Take advantage of that. If going for an interviews don’t hide that they have autism, at the moment it is a big plus on the CV because companies have a quota to fill
4 - look at organsiations like the Princes Trust - get on one of their schemes and that could be a shoe-in for an apprenticeship, a free degree or full employment

Cheers,

Nigel
 
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