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Help on diagnosing autism.

(27 Posts)
MrsPickle Sat 26-Jul-14 19:41:07

Not sure I'm posting in the right bit of the forum, because I'm new here.
I'm a gran to 2 children and a teacher, but that's not why I'm posting, so I have to be careful when seeking advice.
My hub's sister's grandson is on the autistic spectrum, but it's being denied. In fact, it's the elephant in the room. The school has allegedly tested him and said no, he's not autistic, which was received with an almost, 'see told you so' attitude.
But he displays many of the symptoms of autism, including, monosyllabic speech, extreme food pickiness and regimented regimes (amongst others) and we are desperate to help, as are some other members of the family, as we are not alone in our concerns. But we are fobbed off.
Little boy is very well looked after and lacks nothing.

Should we just mind our own business, or is there some way we can get him some help?

Nelliemoser Sat 26-Jul-14 20:00:31

How old is he?. I can see from now you describe his behaviour it sounds a possibility.
You say the school tested him do you mean an educational psychologist?

Depending how these symptom s are affecting him they may feel there is nothing to be gained at this stage by giving him a label of disability!

MrsPickle Sat 26-Jul-14 20:09:42

Thank you. I too, didn't want the label. He's first year junior. 3 years to senior.

penguinpaperback Sat 26-Jul-14 20:16:08

Hi and welcome Mrs Pickle. In the nicest way I would suggest leaving this to the young boy's parents and his school. The behaviour examples you have mentioned are not uncommon to lots of young children who soon grow out of them.

Ana Sat 26-Jul-14 20:19:36

I agree. You are not the child's grandmother, MrsPickle, and even if you were it would be advisable to tread carefully. You can help by just being there for the family if they need support.

MrsPickle Sat 26-Jul-14 20:27:35

Thank you. We will retire gracefully and let things go. We will be concerned from the sidelines.
Your advice has been very welcome.

Purpledaffodil Sat 26-Jul-14 20:28:00

I agree with those wise women MrsPickle. Autism is such a wide spectrum that many children exhibit symptoms without it being life changing. In my experience, teachers often have suspicions that a child is on the spectrum. If the school are not concerned and he has had proper testing, then things should be ok. Friend's son had all those symptoms, but has grown up into a quiet, but well rounded individual. Biting your tongue and just being supportive seems the way to go, smile

Crafting Sat 26-Jul-14 20:48:38

MrsPickle I sympathise with your concern. We are waiting on some help for our DGS too. But like yours, our DGS is loved and cherished by his parents and they will do everything they can for him. My DGD who is not in anyway autistic has extreme food fetish too. Best thing is that you care and are prepared to help if needed.

whenim64 Sat 26-Jul-14 20:53:56

Unless he has an educational, behavioural or social need that requires a label to bring in extra resources, they should let him be. The criteria for the autistic spectrum occasionally widen or narrow, and many children happily grow up without needing that label. A child psychiatrist was recently quoted as saying that children are being labelled for their quirkiness and we should be more accommodating to them (sorry - forgot where I read it).

rosequartz Sat 26-Jul-14 21:05:19

My hub's sister's grandson is on the autistic spectrum, but it's being denied

I am just wondering who has decided he is on the autistic spectrum? If it is his parents then they should be able to seek a second opinion. However, I would be very cautious about giving him a 'label' unless absolutely necessary and as whenim64 says, many children grow up happily without that label.

A young man we know was very 'unusual' for lack of a better word when he was a child; he was and is extremely clever and has grown up into a lovely young man, married, and is much sought after in his field of expertise.

rosesarered Sat 26-Jul-14 21:13:24

It's up to the parents to seek help. The 'school' cannot provide a diagnosis of autism.Our grandson aged 3 and a half had to see several people for tests within a hospital setting. Some people think it's easy to get a diagnosis, no it isn't and you can be sure that when the right people do see your child and you get a diagnosis of being on the autistic spectrum then they will be correct.It's not about a 'label' it's about finding out the truth, because that will help the child to be put into the right school for him/her. Even once you have a 'statement' it's a fight to get the right school and without it you have no chance.You need a statement to get your child into a school for special needs children. True, some children, although square pegs in round holes, manage to cope with being in the rough and tumble of a normal school. Others are bullied and life is a living hell for them.You owe it to your child to find out if they are are autistic.There is a blog on here [which I will not contribute to] by a very pretty 13 year old girl, who gives a very one sided childish [well, she is a child]account of her autism/aspergers.Since 5 of her siblings are the same, it must all seem normal to her.Life with autism can be very, very different to her account I can assure you.

rosesarered Sat 26-Jul-14 21:17:55

I know some people don't believe in a 'label' but you need it to access all the right things for your son/daughter.As the child grows, it can be a relief to know why they feel [and are] different.We are not just talking about a bit of quirky behaviour here.I won't go into details, but we have seen our DGS in such states that it breaks your heart.

whenim64 Sat 26-Jul-14 21:23:56

Yes, extremes of the behaviour and mood states you are hinting at, roses do need a firm diagnosis. Autism is part of a wide range of mild, moderate and extreme disorders. It was heartening to read the blog you refer to - a girl with a positive outlook who acknowledges she has bad days to deal with, too.

Iam64 Sun 27-Jul-14 08:28:14

As others have said, the school can't diagnose, it needs either an ed psych, or more usually, a GP referral to the local CAHMS psychiatrist. The issue of labelling is always difficult, but as roses says, it's the only way to access appropriate support. My grandson is very bright, and the family had assumed his quirky personality was linked to upheaval in his developmental years, and the fact he's 'like his dad'. He was diagnosed at 8, and after listening to the list of reasons that led to the diagnosis, his father saw himself and his own father as 'undiagnosed but on the spectrum'. The diagnosis helped access much less punitive, more creative response to our grandsons needs throughout his school years. He remains unemployed, but is getting good support from Connexions. Without a diagnosis, his school and early adult life would have been even more of a challenge for him, and those who love him.

Greenfinch Sun 27-Jul-14 09:38:11

I absolutely agree with Iam and roses having got a 7 year old grandson on the autistic spectrum. I hated the label he was given at 3 mainly because he was a late talker and didn't "do" creative play but the support he has been given has been beyond good. He has a friend who has not been diagnosed though the school has suggested it to the parents. This boy does not have structured support because he hasn't got a statement and consequently he gets into all sorts of trouble . In fact the parents are moving him to another school which he is most unhappy about
I was also unhappy about the blog mentioned by roses. The girl obviously has very mild autism if she is able to talk about it in this way. The reality is indeed very different especially when you are mixing with children who are not on the spectrum and have no understanding of it (and why should they ?).

rosequartz Sun 27-Jul-14 11:03:49

Just read a poem by a friend of DIL whose son, aged 6, was diagnosed last year with autism (after a struggle on the parents' part to get a diagnosis). He is getting support now in the small school where he is but her lovely poem was describing the struggle they had and still have and asking for understanding for her child, who may appear different and 'being difficult' to outsiders but is seeing the world differently to others. He is a very bright child.

GadaboutGran Sun 27-Jul-14 12:09:41

Mrs Pickle - something you could do (& are doing by posting here) is to find out as much as you can about the autism spectrum & local resources for diagnosis, private if necessary for a second opinion, & and support. Then you are prepared & are can be ready for any opportunity to discuss the issues naturally with the boy's parents, or those around them who may be in a better position to pass it on. Sometimes people who tread where angels fear to are needed as long as you are prepared to take the flak for doing so. In the end they may thank you for it. I wish someone had done that for my SiL for another condition & saved him years of humiliation, self-medication with drugs & misunderstanding in society. The whole issue about whether or not it is right to label a child is fraught & very political as it is a way of saving money if fewer have a diagnostic label. There is a psychologist at Durham Uni who goes on a lot about labels being unnecessary & he had the ear of David Willetts. These conditions are all on a spectrum so of course we all have some traits or another of different spectrums but those who have them at the more extreme end definitely need the support a label provides - money & knowing they are not just 'difficult' people. Much of the problem is the attitude & nature of society which is becoming so structured & less accommodating of people who don't fit into boxes. It's good to hear that the Guardian Newspapers go out of their way to employ people on the autistic spectrum for some IT related tasks for which they are ideally suited.

GadaboutGran Sun 27-Jul-14 12:11:12

PS The guy from Durham always makes the news just before his latest book is about to come out.

durhamjen Sun 27-Jul-14 12:18:53

Fortunately our MP is not like the guy from Durham University. She used to work with special needs children before she became an MP. The Autism society is most concerned at the moment about what happens when ASD kids leave school and look for jobs. She is supporting this through parliament.

rosesarered Sun 27-Jul-14 12:55:44

The problem with 'experts' is that they all have different opinions and the extreme ones have real 'hobby horses' [ easy for them, eh?]
If autistic children are at the right autism schools, they can do quite well in all areas, but the problems come later as Durhamjen says and most according to statistics do not manage to have a job at all . Easy to see why of course, the working environment must be a minefield for them.Once you are an adult and no longer a cute child, there is very little leeway given to you by others.My DGS who is 9, is above his years for maths[and anything techie] but way behind in other subjects and in understanding and emotions.As others have said, authorities are quite keen on not diagnosing, because then they are required to provide the right schooling!

pinkprincess Fri 05-Sep-14 01:48:17

I am marking this thread as it is now late and my eyes are closing.

I have five grandchildren, one of whom has autism, another, who lives with me, has serious mental health problems accompanied by drug addiction. She is 18. She has had behavioural problems from being a very young child but only now the experts think is due to a form of autism but ''they'' are still scrathing their heads over her.

I hope to return tomorrow but now must go to bed.

Jane10 Mon 22-Sep-14 09:00:24

Working with adults on the spectrum I hear time and again "if only X had been diagnosed earlier". One person on the spectrum actually said "Its not a label its a signpost to relevant support". FYI our average age of referral is 38 and the oldest referred for diagnosis was 84!
A diagnosis of ASD is not the end of the world- we see many people who have done well in life. Generally most people are only aware of the ones with severe problems. The TV has a lot to answer for: in order to get the funding to make a programme there has to be a dramatic story. Everyday autism is never covered. Except in one mainstream soap where no fuss is made at all. Wish there was a "smily" for cryptic!

Nelliemoser Mon 22-Sep-14 09:53:59

Help on diagnosing autism.?
My OH almost certainly has Asperger's. If only he would get some help.
He recognises that he shows a lot of the characteristics but would not consider getting advice or support.

He is of the type that never asks for help and the difficulties raised for him is everyone else's fault. He has an MSc but lost many jobs because of the problems he has.

Talking people to death. A seeming resistance to starting something because he has been asked or reminded. So lots more time faffing about.
He was taking so to long to complete pieces of work he became un-productive.

Then reacted badly to constructive criticism. Not by getting angry but then seemed to develop a feeling he is being unfairly got at and his work performance dropping and redundancy following.

Redundancy four times due to his work performance issues and a couple when companies closed completely.

These issues are not to be discussed but are blanked off by "I do not want to talk about it."

ASD is correctly described as a syndrome. There is a huge range of behaviour types and extremes incorporated in the issues faced by an individual.

For those more heavily affected life is difficult for them and their partners.
There is very little support or advice indeed for older people and I suspect that with OH, if Aspergers Syndrome had been recognised and described when he was say in his Teens he might have been able to develop skills to deal with the poor social skills and other difficulties before he became, I don't know... embittered perhaps.

So what I am trying to say is the sooner ASD is recognised (diagnosed) and some skills training or such is made available the easier it might be for the individual to manage. As with learning strategies to deal with dyslexia..

thatbags Mon 22-Sep-14 15:04:08

" A seeming resistance to starting something because he has been asked or reminded"

nelliem, I recently read about PDA (Pathological Demand Avoidance). Your comment reminded me.

Nelliemoser Mon 22-Sep-14 17:25:02

Thatbags Yes I saw that, it did make me think. I could probably add that one to the long list of the issues I notice.

Many of these present and correct in said person.

The social characteristics, the cognitive characteristics and the work characteristics are the most marked.

Hey ho! nelliem Stop going over this catalogue of despair and get some dinner going.