Some assistance with diagnosis please

[Calum]

Morning all, been a while but I'm in need of some advice.

 

We have a 11 year old who has been diagnosed with Aspergers and we're managing him with not too many issues these days.

 

We also have a 4 year old daughter who exhibits many of the signs of Aspergers but not all. We think that she is also exhibiting many signs of ADHD as well.

 

Putting a diagnosis completely aside for a minute, we're having real issues managing many of her behaviour 'traits' at home and have asked for help firstly from the doc.

 

They have put us onto a child psychologist and speech therapist. The psychologist has been to see Bryony at Nursery for an hour and as far as she's concerned there is nothing to worry about. The issues we have are at home though and how to manage the outbursts and complete meltdowns etc.

 

Although we appreciate that a diagnosis at this age can be difficult, we're shouting for help primarily in managing her at home but secondly we're sure that there's something diagnosable there.

 

Soooo, what I'd like to know is:

• Is there an official route that the services should be following in ascertaining if there is either an ASD or something along the lines of ADHD?
  
• Secondly, what assistance can we be asking for in trying to manage her at home in order to make our lives, but more importantly her life, a happier and more enjoyable one?
  

You would think that the servcies would be looking to help where they can but all we seem to be hitting are roadblocks at every turn.

 

Thanks all,

Calum

 

P.S. We're in Aberdeenshire if that helps at all.

[Sally44]

Scotland has a different special educational needs process to England. Hopefully someone from Scotland will post with some advice.

 

Have you contacted www.nas.org.uk?

 

It always helps to get things in writing. So make sure any requests for help, support or assessments are put in writing, because usually there are also complaints procedures, and if you need to complain you need evidence that your request has not dealt with.

 

We also found that keeping a daily diary was very useful. We noted everything of importance about behaviour and things our son said both in the home and out in the community.

 

You can also make a DVD of anything you are concerned about and ask professionals help for that. It would probably be via Health professionals [Clinical Psychology and CAHMS], and you would have to ask your GP for a referal to such a professional that has experience and expertise in working with children with Aspergers.

 

Other organisations that maybe able to help are www.ipsea.org.uk, www.ace-ed.org.uk and www.network81.org

 

Remember to state that you are in Scotland so that you get relevent advice. If they can't help ask them if there is an equivalent organisation in Scotland.

[Lyndalou]

Where in Aberdeenshire are you Calum?

 

The diagnostic process has, in my opinion become more difficult in Aberdeenshire recently with the closure of the Raeden Centre in Aberdeen where my son was diagnosed at just under 3 years old. Saying that, my understanding is that there always was a 'cut off point' in terms of distance people lived to Aberdeen in order for children to be referred to the centre for diagnostic assessment.

 

Now, things are not so 'joined up' in terms of all the professionals working together towards a comprehensive assessment. Again, this may always have been the case in certain areas.

 

Prior to my son's diagnosis he received around 6 months of community-based speech therapy. The referral was based on 2 reviews by the Paediatric Consultant for the area - the second I requested because the PC highlighted autism within 5 mins of meeting my son for the first time and I wanted a longer meeting to put forward my viewpoint and for her to observe him. Ultimately, it did become more apparent that my son was experiencing all kinds of difficulty. The week-long assessment, included reports from Educational Psychologist (who visited for 2 hours at home) , Speech Therapist (Raeden Centre), Occupational Therapy (Raeden Centre) and a trained Developmental Nursery Nurse who observed him over the course of 4 days (this included watching how he interacted with other children and with adults, how he played, how he ate, personal care skills, following instruction etc), Audiology (Aberdeen Children's Hospital - to rule out hearing difficulties and basic check for sensitivities) and Optometrist. We, the parents, had a meeting with the Psychologist (based Aberdeen Children's Hospital whom my son still sees twice yearly) to discuss family health history and pregnancy/birth of my son) As you can see it was very comprehensive. Then the main professionals came together with the Paediatric Consultant and compiled their findings which led to my son's diagnosis of High Functioning Autistic Disorder.

 

I am firmly of the opinion that a professional cannot make a decision about a child in isolation. The fact that your daughter is having her main difficulties at home ought to be followed up as she may be 'coping' to an extent at nursery by being compliant etc (I don't know how your daughter would be so I am only surmising) and then coming home and acting up because she has had a stressful time there.

 

Was it an Educational Psychologist that your daughter saw at nursery? When the Educational Psychologist came to visit, my son promptly jumped into her lap, demonstrating his complete lack of 'stranger danger'. I wonder if a girl were so forward if she would simply be seen as 'friendly' or if she held back then she'd be shy...

 

The fact that she is under a Speech Therapist suggests to me that she has speech difficulties of some kind. Has she had her hearing checked?

 

The NAS Area Officer for Aberdeenshire is Sarah McGregor. She works out of the Autism Base in the Harlaw Centre in Inverurie some of the week and you could call the centre to ask for a meeting with her and she may be able to give you some advice on the best way to go about getting a full assessment. Gail McKeitch is the Branch Officer for the Ellon area and may be able to advise you too. Both of these ladies know their stuff.

 

Collect all the information you feel is relevant on your daughter. Bear in mind that it can be more difficult to get a diagnosis for a girl, especially if she is not exhibiting 'classic' behaviours such as aggressive outbursts outside the home when she is frustrated or upset (like my son does).

 

Lynda

[Calum]

Thanks both for the feedback - much appreciated. MM, I'll certainly look into those additional websites and see what they offer.

 

BN, we're in Insch and therefore covered by the Garioch branch of the NAS. I thought that Gary Wade covered that area though? May be wrong. The route you had covered off is exactly what we're looking to have done as we feel that the assistance we've had to date has been minimal at best. She was asked to see the speech therapist (winnie who's surname I forget) at Inverurie as her speech is far advanced for her age. Winnie observed that she wasn't able to recreate structures of colours, building blocks etc when asked. The only facial expressions she can recognise are happy and angry.

 

Leone Carter was the person who came to do the observations as nursery. Given all the info we have on her (outbursts, complete unreasoning, lack of understanding of basics, lack of sympathy/empathy, hand twirling and complete body rigidity when focused on something interesting and more), Leone still felt that there wasn't enough really to take an observation any further. Whilst I appreciate that she has her remits of what she can cover, as parents we're frustrated and dismayed at the lack of willing from the 'system' to help.

 

We're now going back through Mrs Crumb in Inverurie in the next few weeks to see her and probably back to Lynn Buntin in Aberdeen as she was excellent in the diagnosis with Alexander.

 

BN, where are you based? I'd be interested in having a chat with you one night if that's OK (actually my wife would as well!) about how your diagnosis went?

 

Thanks again all.

[Lyndalou]

Hi Calum

 

I'm not long home from visiting Insch tonight - we were at the Kool Kids Special Needs night. It may be worth you popping along some time to meet other parents with kids in a similar age group informally. We live in Inverurie and my son has attended St Andrews School nursery and will be going into P1 there in 2 weeks.

 

Gary Wade does run the Garioch branch, I believe in a voluntary capacity. The branch caters for children 8+ and mostly offers social activities. In terms of advice, you'd probably be better off contacting the people I've mentioned. I'm quite happy to speak to you and will PM you with my contact details.

 

I don't know of the Speech Therapist you have mentioned or the person who did the observations. The community Speech Therapist my son saw (over 6 months) wrote her report which highlighted the speech and communication issues my son exhibited then referred back to the Community Paediatritian. Are the behaviours you mention the SALT observed in a report of any kind? I wonder if the woman who did the observation was the 'follow up' from this? I do think an hour is a very limited time frame for any observation.

 

Going back to Dr Crum is probably a good route to go down. My son is under Dr Phillips who is on her team.

 

Lynda

[Calum]

Hi Lynda, what is this SALT to which you refer? I've tried a bit googling but can't find anything quickly...

 

Cheers,

Calum

[Lyndalou]

Apologies Calum

 

The SALT acronym bamboozled me when I first came on here so I perhaps should have thought!

It is simply an abbreviation of Speech and Language Therapist!

 

Lynda

[Calum]

Ah, the mist clears - thanks Lynda!

[Shnoing]

Putting aside what your psychologist said - "good" behaviour in the public and meltdowns at home are very typical for high-functioning autistics, who are able to cope with the NT world for some time, but not constantly. So they have to "let rip" in what they feel is a safe environment. (that's a hidden compliment on how you handle her at home)

The only real way out is to reduce the stress she has to endure in the public - her behaviour at home will get better automatically (IF I'm right in guessing that she's on the autistic spectrum, too).

BTW, you should get a diagnosis as early as possible - at age 4, that's already quite late.

Edited August 11, 2012 by Shnoing

[trekster]

according to the adult bristol adhd group, there is another type of adhd within inattentive type ie very hard to motivate. adhd is normally diagnosed after age 7.

 

portage or special parents of special children or another disabled childrens organisation would be my 1st port of call.