Autism Spectrum Disorder diagnosis

[Bartswife]

After years of pushing and waiting for diagnosis of Ashley's condition which we believe to be ASD finally we have had the Ed Pysch. come to the conclusion 'no firm diagnostic conclusions appropriate at this time', she told me on the phone they would treat him as being autistic at the moment because the help in place is the correct help for his transition from special needs primary school to mainstream senior school and they would re assess at aged 14 but the draft copy we have received said he would be re assessed during the autumn term, which is only a couple of months away. He fit the criteria for two of the three triads but in their opinion doesn't fit enough criteria for the patterns of behaviour triad. I am going to question the draft as one or two issues have arisen on our family holiday over the last two weeks. We are finding it difficult to decide what is 'different behaviour' to that of a normal hormonal 11 year old approaching adoloscence. Those of us with SN children learn to make allowances for them and its not always as obvious to us as other people when the children are behaving or being treated differently (does that make sense). I sometimes think I have painted a rosier picture of him than life actually is with him due to the fact I've learned to make allowances. It sounds awful but having a teenager in the house (his older brother) who spends a lot of time in his room or out with friends we don't spend a great deal of time with the four of us altogether and I work weekends so we don't go out then as a family very often. God knows whats going to happen to Ashley in the future if we can't get him diagnosed as I know a lot of help in the future for him depends on getting a 'label'. Its causing a lot of heartache and worry on us as a couple at the moment, we are coming up to our 25th wedding anniversary and although we should be celebrating we almost feel on the verge of giving up. Times are hard at moment, if you've managed to get to the end of this, thanks for listening.

[dkra2007]

Hope it's a small comfort to you to know someone knows exactly how you feel. My DS11 also had all the tests by the Ed Phsyc and Community Paediatrician did the DISCO tests which took ages. Like you we were given no 'firm' conclusion and whilst he does exhibit many autistic traits and behaviours the 'label' was not given.

I also have a teenage DD who also spends a lot of her time in her room (but that's just teenagers for you). DH, DS and I often feel like a family of three rather than 4 as we do most things together whilst DD does her own thing with her friends.

I, like you, worry so much about the future but it gets you nowhere. I find it best to take one day at a time.

Remember you are wonderful parents and if your son is anything like mine is very happy. Enjoy your anniversary at the Yacht Club (we're going there too in a few weeks)

[DizneyBlonde]

Working in a SN department of a secondary school o know how important it is that a child get the correct 'label' so that the appropriate help can be given.

I see so many kids that would benefit from one to one but because they are not statemented they have to share the help from a TA with other kids in the class.

I really hope Ashley has a smooth transition.It's hard enough for kids to go to 'big school' as it is.

Will think of you on my return in September when i too am facing my new challenges.

[whambar]

Bartswife - I really sympathise with you getting a diagnosis is so hard, our Ds never got his diagnosis until he was 8yrs old and even then I had a fight on my hands for 2 and a half yrs to get him statemented(finally did) and now he attends a special school where he is thriving and not just surviving(he has Aspergers Syndrome) - it seems to be that mainstream schools delay in helping these children until they can attend secondary school as it then becomes the secondary schools problem and not theirs - I am not saying that this delay is happening at all primary and junior schools, in my experience and many of the families that I know it has, I would be writing everything down that your Ds has been doing and then go back and ask if that is "normal" behaviour.

[ali-s]

I know exactly what you mean. we were so lucky we got DS statemented when he was so young ( 5/6 yrs), but everytime we have his annual review I'm aware that if he doesn't fit all the right criteria then some of his support hours could be dropped. The question I hate most and always struggle with is ' have there been any improvements in behaviour ? ' as you say - what becomes normal for us is not normal for other kids , and what we think is an improvement ( because it makes life easier for us ) might actually be a step back in others eyes
Don't give up, and be sure to raise the 'issues' you've had on holiday , maybe you need to exaggerate them a little ? if it gets him the help he needs it's worth it. Good luck.

[Guest]

i have two children both with an autism diagnosis and other diagnosis's
alongside the autism
i'm fortunate compared to others as both of my chidren where diagnosed early'ish (my youngest is now 11yrs and starts secondary school in sept)
it's hard work and i can understand you totally, no on gets it at all unless they live it, you need to at all times push on and battle for what you believe is right for your child
statement wise i have information and can put you in touch with people that could help you, eg IPSEA ?
i am lucky to be an informed parent who knows where to go to for support and advice and i have also been trained to give support and directions to other service users/carers, if i can help in any way please feel free to contact me if you just need to talk or someone to listen, i'm new so not sure if i can send you a personal message
mazz

[BarryandCaron]

I'm sorry to hear you are having trouble getting a correct diagnosis for your DS.

Our DS2 was first diagnosed with Pervasive Developmental disorder as his Consultant felt we couldn't cope with an Autism diagnosis at that time along with all his other problems.

Take care
Caron

[Bartswife]

Thanks for all your replies and support. We had him statemented at 7 years old when the recommendation was to move him to his special needs unit where he's been for the last four years but the local special needs unit for seniors is not right for him I think it would hold him back but luckily our local senior (where our other son goes) has a brilliant SN unit (I have three people I know with children on the ASD spectrum who attend that school and have had great results with their children). His statement was amended to 20 hours per week for the move back to mainstream so I'm pleased with that, up to now the work they have put in in welcoming to the school I've been thrilled with. Its just the long term outlook, what help will be in place to help him with employment/social situations and life in general if all we'll have to say about him is he's got speech and language problems and finds it hard to get on with people? I'm feeling very down at the moment and maybe its just me feeling like the weight of the world is on my shoulders - other days I can feel like I can take anything on, but they are getting fewer and fewer! Funnily enought some of you wonderful people have lifted me this morning as I posted another thread about him doing so well with his SATs which have some replies to over the weekend which I've just read. Bottom line is we love our children so much we don't want them to suffer or be hurt in anyway, a mothers love is so wonderful, pity mine is no longer with us to give me a bit of support. I wouldn't wish this pain on anyone but I'm so glad that so many of you know where I'm coming from and I'm not the only one suffering as that is how it feels sometimes. Love to you all.

[Guest]

you really are rushing ahead and worrying about the future, if it helps and if you have a social worker you could ask them about something called a direct payment, it's like an "opt out" of social services care or respite

my daughter who's almost 14 has her own PA (of our choosing) and they do all the girly stuff that she is isolated from because she has no friends and needs support to access the everyday things other take for granted, we are extremely lucky in that we have a great PA who looks like a big sister and gets along great with my daughter

we have alloacted 18 hours during the school holidays and 12 during term time, it's great for us because i know once my daughters out there doing all the girly stuff, she's safe and more importantly having a great time, i know this PA in particular leaves us in sept for university abroad and we'll be very sad to see her go, she will come back to us for holidays though so at least we won't lose her altogether

right i can see that i'm waffling the point about worrying about the future, is that no one knows what it will bring but there are things in place that you can access such as a direct payment and then moving on from that independant living? sounds scary doesn't it but i've seen and experienced first hand people, like my daughter only older, accessing the supported living programmes there is out there

the same goes for supported employment, i was lucky enough to spend some valuable time with a lady who had downs syndrome in her first ever job and it was a massive challenge but also so rewarding
i could recommend books and reading on these but you'll come across them soon enough and if your house is anything like mine you'll just have enough energy left at the end of the day to collapse into bed at night, never mind reading
i'm trying to reassure you and i hope in some way it's helped even if it's just a little
be positive and know that you are not alone and nothing is out of your childs reach, there are barriers and huge walls to climb but you will see great rewards for having the strength and determination to try

try not too worry too hard, take care

Mazz

[Guest]

Our son Ben is coming up to 18 on Christmas Eve, so the fight to get him in the right place starts all over again as he will move to adult services. We are very lucky that he has been at The Robert Ogden School for Autistic Chidren since he was 3 years old, and he will stay there in the post 16 unit till he is 19 1/2. I really do worry what the future holds at times, as we are getting older, and he is 6' 5" and 16 stone,so is a handful, especially when he has an epileptic seizure. His disability is such that he will never be able to live independently, and needs one to one tutoring at school. So we reluctantly have to think about residential care for him, which is a very difficult decision to make. The way I cope is to think that if he were a 'normal' 19/20 year old, he would be moving on with his own life anyway. Believe me, my daughter who's 19 lives her own life now, though she still keeps expecting us to pay for it! Just wanted to let you know, you're not alone, and hope you can try not to worry too much. Things have a way of working out just fine in the end. It does feel daunting sometimes, but you will get ther in the end.

xxMel