Son diagnosed with Aspergers last week. Advice for parents very welcome

(41 Posts)
willyoulistentome Wed 30-Jan-13 09:12:09

My DS1 has always been difficult, tantrumming etc, but up to recently I thought he would 'grow out of it'. I suppose I buried my head in the sand a bit. It's amazing what you you get used to, and you assume is normal. I suppose we sort of came to our senses this year and realised that in comparison to his peers and his 7 year old brother, he was not developing as he should, and that we were finding this parenting lark so much harder than everyone else seemed to be... because of DS1. I spoke to the GP and school about it just before Christmas. I wrote down everything that was worrying me. After one visit with a child psycologist just me alone to discuss him, and one visit with DS1 by himself, she has given us a diagnosis of Aspergers. It's obvious now that he will not grow out of it, and that in fact it will in all likelihood get more difficult as teenage years come along. I feel so sorry for him. I have been so horrible and shouty with him. He is really starting to struggle academically. I fear for what is in store for him at secondary school. I fear he will never get a job. I have a (40 ish) cousin who has severe Aspergers, who has been sectioned in the past, never had a job, girlfriend, or managed to live independantly. His AS is so severe that it in fact 'looks' nothing like DSs, so it didn;t occur to me that that was what was the problem with DS.

Dh is in a bit of denial - has not yet read the report...Doesn;t want it on DS1's 'record' as if it is a stain on his character. I am weepy at work and unable to think about much else at the moment. I have ordered the Tony Atwood book, and trying to find out as much as I can.

Anything anyone can tell me to reassure me, will be very welcome right now.

kathy79 Tue 12-Feb-13 10:09:08

My 11 year old was assessed 18 months ago due to aspergers symptoms by camhs. Because he was a school refuser and has profound dyslexia, dyspraxia, hypermobility and irlen syndrome as well as medical issues. Camhs after 3 appointments assured me that it was anxiety and discharged him. I heard nothing else on this matter from cahms after this. Recently my son has been awarded a statement of special educational needs and has started a home and hospital inclusion unit and he has many areas of difficulty but is extremley bright.
10 days ago my son beacme very ill and severley dehydrated and was hospitalized and dripped due to viral gastroenteritus and pussy tonsills. However when the consultant was going over his medical history he had his medical file open so i could check everything and remarked how well he was doing considering hes high functioning.
I quried the consultant on this to find that according to my sons medical notes he has aspergers syndrome.
This explains an awful lot about my sons difficulties and traits, but im unclear as to why i wasnt informed of this!

Every child is different and even those with Aspergers syndrome. I have learnt that although each day has different challenges you just have to take it one day at a time!

kathy79

doydc Mon 04-Feb-13 12:08:03

Hi, my son was 2.5 yrs old when he was diagnosed with Aspergers. He was our first and we thought he was just very naughty. We were lucky to catch it so early thanks to the nursery manager which said he was showing flags for autism. We later had this confirmed by a Psychiatrist.

We started an ABA programme immediately as well as shadows in nursery, paid for it all, and we did it for about a year and a half. It was phenomenal, all of the experts (ed psych, psych, SALT, OT) all pretty much said that it was so mild and couldnt be picked out from his peers. We stopped the programme and this weekend actually started a new one, because he hasnt done well since going into reception last Sept. He hasnt lost the things he learnt on his first programme, he is just a different boy at 5 and his new programme will now work on different things such as social skills and playdates and obviously compliance.

I know this isnt for everyone, but if you can I know other parents where ABA has been life changing for them, and I say them, because lets face it living with an ASD child is unbelievably difficult, so if its gets easier for them, then it does for your entire household.

I undertsand what you and your husband our going through, I think to us it felt like a mourning period when we first found out, you almost have to mourn the life that you expected your child to have.

We told baely anyone up until last week, where we just got fed up of everyone thinking he was naughty. Id have hoped he would never be labelled, but being labelled as naughty seemed worse.

I wish you the best of luck, I would say go to some parent support groups and if you have ay ABA questions, Id love to help

Ineedmorepatience Sat 02-Feb-13 18:38:19

It seems like there are quite a few people over here whose children have recently been diagnosed.

Have any of you been over to the special needs children board. It is very friendly and there are lots of us with children with aspergers/hfa/asd.

smile

PostBellumBugsy Thu 31-Jan-13 16:48:14

Thank you Attila - I've had a look at IPSEA & even taken some advice from them - but it is just such a bloody battle. Fortunately, the head of his current school is much more supportive, so I'm more hopeful this time around.

Hi PostBellumBugsy,#

re your comment:-
"I've struggled a bit with getting LEA help. DS is not particularly disruptive & is clever. Even with the dyslexia, he was only 2 years behind & in my LA, their criteria was more than 2 years behind to start qualifying for extra help".

With regards to your second sentence, you need to be aware that this could be seen as the LEA operating a blanket policy. Such blanket policies are illegal in SEN case law.

Would suggest you look at IPSEA's website www.ipsea.org.uk and arm yourself as well with the SEN code of practice (available online).

I also found that DH was very resistant to the idea that there was anything different about DS2. He just would not hear it from me, but when the school SENCO and a professional from an external agency BOTH told him "If this were my child then I would be very concerned" then he did accept that I wasn't imagining things. Even once DH was on board, I found the process of assessment and diagnosis very emotionally exhausting. It does get better until the next stage of having to deal with the system to get them the help they need.

willyoulistentome Thu 31-Jan-13 11:13:37

Thanks everyone. I have a cousin who is very severely Aspergers, but I am absolutely positive that FIL (now deceased) had it, and sometimes DS and DH are way too similar for comfort, if you get what I mean. DH has problem with 'flexible thinking' and social interactions. He is a computer programmer and I sometimes jokingly call him 'Mr Literal'. Hey - it might all help me handle him better too!!!

I am a bit concerned that DH is showing no interest in this diagnosis and basically has the attitude that he wants to ignore it and not 'make a big thing' about it. I suppose it's NOT a huge issue, but he doesn't want to even put any measure in place at school, and I think he is dead wrong there.

singinggirl Thu 31-Jan-13 09:03:26

What you say about handling situations better, finding hidden reserves of patience and having fewer meltdowns really strikes a chord with where we were three months ago - and these things have snowballed for us - we are handling DS2 much better, he is calmer and happier, the whole family is more relaxed. If your DH is like mine he will also improve with how he handles things, although mine still won't mention the word Aspergers.

But we are all happier and handling things better now, I hope this turns out for you as it has for us so far smile

DS2 was diagnosed when he was nine. He us now nearly eleven and is making great progress. We are planning for him to go to the same mainstream school as his older brother in September. They have a wonderful learning support department and tend to get at least half a dozen children with Asperger's or HFA in each year group.

PostBellumBugsy Thu 31-Jan-13 08:56:15

So glad to hear your have a supportive Head Teacher - I think that will make a huge difference.

Glad to hear you feel more positive about it all too. Seize all the help you can get!

I could be very wrong here, but I think some men have a harder time accepting that there is something wrong with their offspring and take longer to make the changes in their own behaviour too! I think patience may be required with both your DH & DS.

Always lots of support on here for when you need a rant though! grin

willyoulistentome Wed 30-Jan-13 21:19:43

Hi folks the Dr in question has further sessions scheduled with DS, but feels she already had enough clear evidence ( for want of a better word) that he is on the spectrum, so gave us the diagnosis when we last met her. We will continue to work with her. Saw the HT today who was lovely. HEr son is also high functioning autistic ( speech delay) so not classed as Aspergers. She seemed to know an awful lot about it and she is referring DS to an OT used by the school. We have further meetings booked with her too plus his class teacher next week. She said there are some screenings they can do to try to pinpoint his learning issues and work out ways to help him understand better at school. I am already finding that I am handling situations better knowing that I can't give a string of insructions like I can with DS2 and expect to get anywhere. I am finding hidden reserves of patience!! we have had fewer meltdowns by FAR this week then previously, although he did have one just now when DH came home and told him the bloody half time football scores and wound him up right at bed time. Cheers DH!! DH and I need to work on things lke that I feel.

Ilisten2theradio Wed 30-Jan-13 17:09:47

DS is now 12. He was diagnosed at 6.
He is now in a mainstream secondary - with a statement. He gets some help - mainly around organisation, a bit of OT and social stuff.
He is doing really well mostly.
He still hates change. It is best to try to warn him in advance if possible so that he knows - even though he will resist it.
ROUTINE is good. So regular bedtime, regular getting up time, regular morning routine.
when talking to him I need to be literal and precise.
Now it comes to instructions if I need him to do them such as Teeth, hair, jumper, shoes. He now knows what I expect but a simple list of words sticks better than " go and brush your teeth then your hair, get your jumper and come to the front door to put your shoes on"
Also that is probably a bad example as he tends to be bad with lists - so keep it to 2 or 3 at most.
We explain things all the time - usually turning it back on him so for example " Would you like it if X did/said Y to you? Would it make you feel bad? - Well he feels bad now you have done/said X and that is why"
"is it nice if somone does XYX? NO? Well you have just done that to me and it makes me feel ......." Lots of explanation about feelings and recognising that his actions have consequences on others. Constant repetition. It does work though and now he can realise and self regulate so much better.
IN HS he had been put in a class with 2 other AS boys and they have hit it off. Its really nice to see...

deepbluesea Wed 30-Jan-13 16:52:18

DS has AS and he was diagnosed by a paediatrician and then we got a second opinion from a clinical pychologist - she was qualified to diagnose. Some parents get confused by comments by educational psychologists, who usually can't diagnose.

I agree it's important to get a written report from the assessment and to clarify whether this is considered to be a full diagnosis. There are formal diagnostic procedures with structured interviews, with several professionals involved - but ours was just based on the paediatrician's assessment, who only saw DS once. So it just depends on the diagnostic pathway in your area (you should be able to find this online).

DS was diagnosed at age 9, he is 14 now and he's in an independent special school funded by the LA. I don't agree with your HT that a child of nine is too young to be told, in fact I think it's unfair to keep the information from him. This age is about the time that AS becomes more problematic, the child notices how different he is from peers and social relationships become more complex. Understanding his diagnosis can help him come to terms with that, and there are a lot of books these days aimed at that age group.

It is hard to predict how your DS will develop and where he'll fall on the spectrum. DS used to seem to be at the milder end as he's very academic, but he has a very high needs statement now, and he's much less independent than his peers (no possibility of him travelling alone to school). I've found it's best to focus on life skills, even if that means reducing the academic demands on him (he's likely to do up to 6 GCSEs to allow more time for life skills in the currriculum.) There is no point having a string of qualifications but not managing to live independently or develop social relationships - that's likely to lead to poor mental health, which sadly affects a high proportion of young people with AS.

PostBellumBugsy Wed 30-Jan-13 16:32:16

Um, Susan2kids - a clinical psychologist can make a diagnosis of Autism or Aspergers. A psychiatrist can also make the diagnosis - but it is incorrect to say that a psychologist can't diagnose.

Check out the Autism UK website: www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/professionals-in-autism.aspx

Susan2kids Wed 30-Jan-13 15:23:29

HI Willyou,

Please notice im not saying that your child doesn't have the condition just that i think it very unprofessional for the psychologist (no medical qualification, and very little control on the title) to give you the impression that your child can't improve and make a blanket diagnosis for a condition that like autism is now considered a spectrum. On the basis of a single visit. One of the reasons it takes time to diagnose such things is that generally you dont leap to conclusions and simply saying 'aspergic' int too useful as its a very individual thing.....A psychiatrist (which im not) and to be honest a decent psychologist I would expect several observations of your child to identify, specific needs or tactics to deal with his personal manifestation before making a full diagnosis of his condition and or needs. Most people with aspergers can learn coping tactics to deal with it and the earlier these are correctly identified the easier it will be for your child to cope at say secondary school. hope that helps....

willyoulistentome Wed 30-Jan-13 13:13:53

Susan, That's very interesting. I did think it was quite a quick diagnosis, but I am not doubting it. I have heard of people struggling for years to get a diagnosis, and I was suprised at how quick it came. We have a draft report which DH has finally taken to work with him today to read. There are a couple of minor little bits of history in it that need changing, but when it's finalised she will forward to GP and school. Apart from speaking to me and to him, I completed a questionnaire on various aspets including sensory stuff.

How would a psychiatrist go about diagnosing?

Susan2kids Wed 30-Jan-13 12:53:32

The most important thing is not to panic. Firstly you need to define what level of the condition he has. A psychologist is not entitled to make a medical diagnosis only a psychiatrist can do that....so if a child psych said after only 1 visit to your child that the child has aspergers I would be questioning the professionality of that practicioner because that's simply not enough to make that conclusion. You shouldn't write your son off on the basis of one statement from someone who couldn't be bothered to assess properly. Most children demonstrate autistic or aspergic traits at some point, this does not mean they will neccessarily continue or cannot be addressed to allow more 'normal' functioning. Nor would the psychiligust have been able to tell this in one visit. I would look for a second diagnosis from a pschiatrist (avoiding the original practice if thats their working method) and then seek specific advice acccording to the assessed functioning level of your child thereafter.

singinggirl Wed 30-Jan-13 12:51:09

My DS2 was diagnosed as Aspergers in October aged nine. DH doesn't like him 'being labelled' but I am looking from the point of view that we can now ask the questions when looking at secondary schools and hopefully they will be able to support him. Since we started to understand him better, he has seemed much happier, which makes him much easier for us to deal with as well.

We haven't been giving way to him, but trying to see things that he finds hard and then giving him strategies to deal with things. A lot of his difficult behaviour is just stress at handling difficult situations, so as we ease his stress we also improve his behaviour. We too have made lists for what to do in the morning and after school, which he loves. He works his way through the list and is then very pleased with himself when he has achieved everything on it. He also used to be incredibly slow at most things - getting dressed for example. A digital watch has made all the difference there; now he times himself and aims to improve his time! Being successful by completing the list of tasks or beating his dressing time has improved his self-esteem.

I have also added some rewards that I would never otherwise have used - ten minutes time on the DS if everything else is done before school. I give a two minute warning of him stopping an activity before I actually ask him to stop, because then it is 'pre-scheduled' in his mind. We also have a family planner calendar, and I am now very strict about everyone (including DH) writing everything they do down on it - then DS2 knows what is going on each day.

He is Y5, so we will start looking at secondary schools soon, but we are in Kent which has a Grammar system, which seems to work well for many with Aspergers - since many are high fliers academically, the Grammar Schools receive a higher concentration than you might get in comprehensives, so they are used to supporting these children.

PostBellumBugsy Wed 30-Jan-13 12:46:25

Shares pride with Lancelottie - good on your DS. smile

I've struggled a bit with getting LEA help. DS is not particularly disruptive & is clever. Even with the dyslexia, he was only 2 years behind & in my LA, their criteria was more than 2 years behind to start qualifying for extra help. Also the primary school head was unbelievably unhelpful - yours sounds like she may be more supportive.

After a really long battle I did get an hour a week additional help for him at primary school & I am now going through the battle to get funding for the special school he is at. From what I can gather my LA is particularly tight, other parents at the secondary school have boys with less issues & have managed to get funding.

I also work F-T and think that I probably haven't applied myself to the funding battle as rigorously as I could have done, because it is usually 10pm at night by the time I get to work on it all.

DS is another one who hates any kind of dressing up day at school, he doesn't even like things like cake sales if they cut into lesson times! It has to be like it is on his timetable!!!!

willyoulistentome Wed 30-Jan-13 12:42:54

'Have you got clothes? Come and eat breakfast, then do your teeth. No, not until your socks are ON, I didn't mean that. And your pants. Put the book down. Not in the cereal... '

yes,yes,yes,yes - every bloody day!! You made me laugh ! Will draw a list TODAY!

willyoulistentome Wed 30-Jan-13 12:40:13

Lancelottie. That sounds very positive! Thanks.

We are a bit rural here, so I have a choice of about 3 seconday schools, and if you take into account logistics of getting kids to school and me getting to work, really only 2.

Lancelottie Wed 30-Jan-13 12:39:50

Oh, I would second (third?) the list-with-pictures method of getting things sorted in the morning.

'Have you done all of your list? Good.'

It really beats the previous 'Have you got clothes? Come and eat breakfast, then do your teeth. No, not until your socks are ON, I didn't mean that. And your pants. Put the book down. Not in the cereal... '

willyoulistentome Wed 30-Jan-13 12:37:48

I'm in South Oxon.

willyoulistentome Wed 30-Jan-13 12:37:02

Lifeisontheup - my son also hates it when things are different to usual at school. He hates things like 'Children in Need' or home clothes days fundraisers, when they all come in looking different. He hated having to dress up a as a Viking when that was the topic in Y3. He never wants to do anything like this and will refuse to dress up and just goes in in school uniform.

Earlier tis year the class had a residential at an outdoor activity place. 2 nights away. He came home in PJs, after lying to the TA that they were troos, his toothbrush had not been used, not his soap and flannel, kecks not changed. He had several major meltdowns the weekend he came home and was able to relax. They are due to go away for a week in Y6. He is dreading it, and I am dreading him coming home from it. So major doubts. Will be speaking to the Head about it when I meet her today.

Lancelottie Wed 30-Jan-13 12:36:56

If it's positive stories you'd like and because I'm bursting with pride at DS1 today

DS1 has had a statement (i.e. entitled to one-to-one help) since he was 10, so fairly hefty extra needs.
He goes to a mainstream secondary with a specialist unit, integrating into the main school wherever possible.
He's never been bullied at secondary. He has struggled a bit with lack of interaction, but now (yee-hah!) has a group of oddball friends.

And (drum roll) today he went to the dentist, on his own, on two buses, and talked to them about his own treatment.

I think what I'm saying is that given a correct diagnosis and a suitable school, it may be that things will get better not worse for him through the teenage years.

Certainly quirky, Aspergers, hard working, shy DS1 is a bloody sight easier than bolshie teenage DS2 right at this moment.

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