Grandson diagnosed with ASD.

[CE3K]

Hi. My grandson has recently been diagnosed with Asbergers and has aspects of ADHD. He was diagnosed before summer holidays but only got told of results of this 2 weeks ago and still awaiting full report of diagnosise.

Was told that a further meeting was being arranged for 31st of this month with the agenda of looking at medication to help control his ADHD.

As much as i wish for my grandson to recieve all the help he may require i feel things are running away from us. Although not totally unexpected it was still a shock to find out he had Asbergers.

The time frame is moving faster than what we expected. I mean i'm still trying to let it sink in at thesame time as trying to check web sites , look up support groups/training etc and now having to look at what medication is best suited for his ADHD.

Basically we've been told he has Asbergers with ADHD, given a booklet with web sites, books to read, and a few contact numbers for further info/help and then asked to then go in and discuss what meds is best to control his ADHD.

Just feel that im not fully able to take in all info i need to make a decision on what meds he might need in such a short period of time.

Dont want to rearrange meeting as this can lead to delays in getting grandson the help he needs, but is there anyway i can stop the runaway train from derailing.

Thanks.

[Sally44]

I think you feel it is moving very fast because it was unexpected and so you are only now starting to learn about his diagnosis. For many parents there has been years to going back and forth to professionals because they were certain something was not right, and often parents have come to the conclusion it is probably an ASD.

 

I would say just let it run its course. It takes time for these things. If he has been referred to a Developmental Paediatrician or CAHMS Psychiatrist for medication for the ADHD, then that referal will usually take another 4 months.

 

In these months you can read up about Aspergers and ADHD. I could also recommend you download a copy of the SEN [special educational needs] Code of Practice [from the publications list at the top of the Education Forum].

 

As he is diagnosed with Aspergers, that will mean he will be mainstream due to around average cognitive ability. However he may need extra support to cope and this book will explain how the SEN process works as it is a graduated approach.

 

How old is your grandson?

[Sally44]

This is a link to a government document which explains the process of how a child will receive a diagnosis - what professionals they see - what the timeframes are - what support is provided.

 

When my son was first diagnosed I was just given a leaflet and it took me years to piece together how the Education land Health professionals were involved and in what ways they were similar and what ways they were different.

 

This booklet will give you an overview of the system.

 

http://www.dh.gov.uk.../dh_4090571.pdf

 

I know it is more stuff to read - but take your time. You've got as long as it takes to learn about the system. But I would recommend you don't call a halt to the process. Remember that any professional that becomes involved, or any support in school is going to cost the LA and NHS money, and your asking them to halt is going to save them money and every department is looking to save money. So let things run their course.

 

How are the parents coping with this diagnosis, was it expected?

Edited October 10, 2012 by Sally44

[CE3K]

Hi Sally 44.

 

We, my wife and i, happen to be the Guardians for both our grandsons.We are at present reaching the final stages of getting residetial order through the courts for the boys to remain with us till legal age. This in itself has only taken 4 years to get to this stage and boys are still under residential order from children's panel.

As for the parents,there mum ( our daughter ) has been notified of his condition and there father has been kept in the dark as he has limited access ( when ever he can be bothered to take an interest ). How she has taken it is basically a case of " i knew there was something wrong with him ". Not the best attitude to take i'm afraid but wasn't unexpected.

We have had both boys living with us for the last 5yrs and under social work residential order for the last 4yrs. The youngest boy is 7yrs and he is the one who has been recently diagnosed. His brother is slightly older 11yrs and only in last 2yrs has he been diagnosed with dyslexia. Only recently (2 months ago) his social worker had mentioned to me that she had spoken to the consultant that had dealt with the younger brother and he had mentioned that the older one has got aspects of asbergers too, although this was not mentioned in his report.

I agree with you that maybe it was unexpected, but only because i had always thought that he had ADHD and had pushed at childrens panels for both boys to be examined, eldest for dyslexia and youngest for ADHD. Think as still under social work provision this had helped to get diagnosis quicker for boys, but maybe i'm wrong.

I am glad that they have diagnosed him and now we know what it is ,get the help and advice that can help him lead as normal a life as possible. My concern is also for the eldest grandson and wondering if i should ask for him also to be tested on Asbergers, especially as he will be attending Secondary education next year.

I appreciate the advice you are giving and it helps to know that there are others who have already went through what we are going through, and can reach out to them for advice and guidance.

Thank you.

[Lyndalou]

Hi CE3K

 

Would you mind saying where in Scotland you are? I live in Aberdeenshire and my son has High Functioning Autism. At first it can be a real shock when you get the diagnosis and it can take some time to come to terms with it all. If you feel that it is important to pursue diagnosis for your eldest grandson then I would urge you to do so. You are right in saying that he is at a crucial time in his education and pre adolescence can be a very difficult time for children on the autistic spectrum.

 

Best Wishes

 

Lynda

[CE3K]

Hi Lynda,

 

We live in Glasgow and both boys do there schooling in South Lanarkshire. Have spoken to boys S/Worker today and she suggested at next meeting with consultant to ask him for a diagnosis for eldest grandson. As like you say it can only be benificial for him when at Secondary School as they can then have things in place for his developement.

The youngest boy, his school has been notified by us of his diagnosis, and it will be interesting to see what they come up with at the meeting we will have with them concerning his education. Of course this will not happen until they to have a copy of the report.

[Lyndalou]

Hi CE3K

 

If you know this already then disregard but after a quick search, it appears that South Lanarkshire is well catered for by the NAS. There are monthly support meetings, telephone and email support and a club for 12-18 yr olds (may be worth bearing in mind for your eldest grandchild if the result is positive).

 

Contact 07917 072587

southlan@nas.org.uk

www.trialogue.org.uk

 

Certainly from my own experience, it was around 11 yrs old that I started to have major difficulties socially. All kinds of issues can arise with regards to having to cope with a totally different school environment and all the hormonal changes, constantly shifting social expectations and academic pressures adolescence brings with it. Getting support in place for both your grandsons well in advance of this (if possible) would be very prudent.

 

Lynda

[CE3K]

Hi Lynda. Thanks for the info, wasn't aware of this although i am now getting info through s/w concerning carers groups in South Lanarkshire.Think though these are just for carers not aspergers groups.

Certainly worth following up though.

Thanks again.

 

Rob.

[CE3K]

Just recently had meeting with child sychologist who is dealing with grandson. Explained to us what he was putting in place for him, concerning treatment. Meeting with Consultant Phychiatrist on 13th of this month to discuss forms of medication for grandsons AD/HD. Awaiting appointment with Occupational Health Worker concerning grandsons toileting, co-ordination and balance due to his falling/tripping. Also awaiting appointment for Speech & Language due to difficulty in sometimes understanding what granson is saying ( this was his idea ), think had something to do with how when talking his voice goes from high pitch to low pitch mid sentence, which can make it hard to understand what he is saying , and can often result in asking him to repeat ,which i am sure is frustrating for him. Have also raised subject of getting his older brother reassessed for aspergers, To this he said that when he was getting assessed for his dyslexia, the tests would have picked up if had aspergers but that it wasnt unknown for siblings in one family to have aspergers, quite common, and as such if we wished to discuss this more at home and still wished for older grandson to be assessed for aspergers then he would gladly put him forward for assessment. On the subject of older grandson, would anyone know what average of the population suffer from dyslexia. Reason i am asking is that had a meeting with his teacher the other day concerning how/why he didnt attend school last Tuesday. Through this discussion with teacher, she happened to mention that he was not the only one in his class with dyslexia. In this discussion she said there were 9 children including my grandson diagnosed with dyslexia, 8 confirmed diagnosed and 1 put in the high catagory of possibility.Although she said that she couldnt divulge who these children where, during discussion she did mention 2 of them, these kids names were mentioned on more than 1 occassion. Out of a class of 23 this would work out as 1 child in 2.5 / 2.6 having dyslexia. Is this percentage not very high ? Or is this me be fobbed of due to my concerns about her teaching methods when teaching grandson.

[Sally44]

I think you'd get more definite answers from the British Dyslexia Association, or Scotlands equivalent if they have one.

 

My son has ASD and Dyslexia/Dyscalculia. What concerned me was that I was told something similar. However each child's difficulties come from different things. There is not a one size fits all approach for ASD [which includes Aspergers], or Dyslexia or Dyspraxia. They are neurological problems which are different from person to person.

 

Whatever special needs a child has they should be investigated so that whatever supports or approaches are used as appropriate.

 

We had lots of concerns about his literacy programme in his former school. It was teaching them how to read/spell by chanting out words parrot fashion. But my son can repeat hours and hours of TV/DVD dialogue parrot fashion - yet he struggles to link the letter 'sound' to the letter 'shape' - and that is often because he does not hear the sounds correctly.

 

There are independent CRESTED schools [which you can access via their website]. But I don't know how you would secure a place for either of your grandchildren at any of these schools as you are in Scotland. These schools tend to have a number of Aspergers children who also have specific learning difficulties [which is what dyslexia is].

 

Or you maybe able to get private lessons from a specialist dyslexia teacher. As we are in England we managed to get that written into my sons Statement. So his independent school also buys in 3 hours a week from a specialist teacher. But it took us a couple of years and lot of money and two educational tribunals to achieve that. As Scotland's SEN laws are different, it might be a better option to get private lessons. I would look at the BDA or Dyslexia Action if you have both in Scotland.

 

And, as you have found with your grandchildren, when a child has one type of difficulty it means they have a higher possibility of having other co-morbid difficulties/needs. That makes the child more complex, and makes it very important that they get the right therapy input and teaching approaches. My son has ASD, Dyslexia/Dyscalculia, Dyspraxia, Sensory Processing Disorder, Severe/Profound speech disorder, OCD and Anxiety Disorder. Yet he has above average cogntiive ability, with specific difficulties with working and short term memory and executive functions. And he gets very frustrated sometimes because school work can be both too easy and too hard at the same time. Too easy because he is clever, yet too difficult because he cannot process it, read it, write answers, etc.

[Lyndalou]

Dyslexia Scotland helpline:

 

0844 800 8484 Mon - Fri 10-1, 2-4

 

helpline@dyslexiascotland.org.uk

[CE3K]

Hi Sally 44, thanks for the advise. The working memory is a problem for him hense the school have been advised to use visuals when giving instructions to him, to much info and the brain cant decipher it. Dont believe this has been happening which i think has resulted in meeting with teacher. Hopefully things get back on track now.

Lyndalou thanks for those contacts, think i will give them a call in morning as im off work then.