Gransnet forums

Ask a gran

My son wont accept my grandson is Autistic

(40 Posts)
Lyndajgran Wed 01-May-13 10:43:55

my grandson is 5 years old and although not officially diagnosed, I know that he is autistic but my son will not listen to me and I'm scared if I keep mentioning that he need to seek some advice (on parenting) he will stop talking to me and not let me see my grandson. His wife is no better but I really need to get them to understand how they can help

annodomini Wed 01-May-13 11:05:45

If he is 5, Lyndajgran, he is, presumably, at school and if they see any cause for concern, they should be contacting the parents with a view to an assessment by an educational psychologist.

whenim64 Wed 01-May-13 11:06:26

If he is autistic, this will be picked up in school and the parents will be asked to cooperate with an assessment for the autistic spectrum. Some behaviours can appear to indicate autism, but it doesn't mean that is the case, and a diagnosis or label of autism for some children is not necessarily needed in order to enable the child to progress and develop. It all depends on the degree of concern.

Be as supportive as you can - they might be as worried as you are, but don't want their child to be saddled with a label. If their parenting is contributing to the behaviour that is worrying you, can you or anyone else help them to get a break? Sometimes, children behave differently away from their parents, in school and with grandparents, which could indicate whether there is indeed a chance that he is autistic, or simply not yet understanding how to behave appropriately.

inthefields Wed 01-May-13 11:08:48

Hi Lyndaj

this is such a difficult place to be, and I can empathise as I am watching my new grandson like a hawk for signs as his aunt (my other daughter) and several other members of the family, over the generations, have Aspergers -at varying points on this spectrum.

I honestly think that there are limited options for you. No parent wants to be told that there is a problem with their child, and the reaction is always going to be highly defensive which can easily translate to real anger - particularly if they do not perceive there to be an issue. I was blind to my daughters problem for years as she was "just like her Daddy" .....she was only diagnosed as an adult, when she sought the diagnosis herself. Her father remains undiagnosed, and completely un-accepting of his daughters formal diagnosis despite the fact that she has been participating in the Cambridge research programme!! At least these days, it is likely to be picked up at school (AS wasn't even on the diagnostic register when my daughter would have benefited)

So... what choices do you have? I think that you could push hard, but you risk losing all contact if the parents become angry enough. I am not sure that it would get you anywhere, other than alienated, as although you absolutely have your grandchild's best interests at heart the parents won't see it that way if they haven't realised for themselves that all is not as it should be. In their shoes, you will simply be criticising their child.
You can hold a watching brief - learn about the best ways to interact with autistic children and apply them whenever you are with your grandchild. Be sweet, be kind but just watch .....and be there to support when, and if, the parents actually start to realise that there is an issue.

I am not sure there is any other alternative, but possibly other posters will have some thoughts.

There is a caveat to this, concerning the parents treatment of the child. If you feel this is actually abusive then you have really no choice but to take action ....but that would apply regardless of autism, so I am assuming its not the case.

cathy Wed 01-May-13 11:23:35

Lyn he wont accept it because he is only looking at the negatives.

Autistic children are amazing, they can be brilliantly talented. They are also quite calm in nature.

I think I would just learn as much as I could about Autism and maybe even get connected to a help group with people that have Autistic children so that he can share with them his fears, I am sure there will be many that handled it the way your son is handling it and if he could only get to speak to those people, that come through what he is presently going through, it would help.

Best wishes, things will get better, they usually do smile

Gorki Wed 01-May-13 12:04:42

Lyndaj what are the symptoms you are concerned about? We have the opposite experience to you .Our daughter had our grandson diagnosed at 3 by a paediatrician who watched him while talking to us all for an hour and then said "what do you think is wrong with him?" My daughter said "autism" and the doctor said "you are right". We,the grandparents, do not dispute that he has a problem but we dislike labels.He invades people's personal space , he asks incessant questions and he walks on tiptoes which can indicate autism. He sometimes interprets things literally and finds Maths difficult but at five he is above average in reading . So what? I believe he benefits from being treated normally. After all, he has to live in the real world. This is very different of course from having autism in a more extreme form and obviously those children do need special education but for those who can manage mainstream I question how helpful the label is. My grandson's best friend at school is very much like him but has no label. Who is better off ?I ask. After all there is no cure and help is quite limited. My grandson is statemented but not all autistic children even get that .I would say think twice before getting a label.

inthefields Wed 01-May-13 12:26:28

Gorki - I support this stance 100%.

My daughter is very clear when she discusses her Aspergers, that the only reason she copes as well as she does now is because she was treated completely normally as a child and expected to follow the same boundaries as her sister.
She states: "in my opinion an early diagnosis can be actively harmful, as so many parents will then make too many allowances. I owe my level of function to having a mother who treated me just like any other child. I learnt the rules because I didn't get away with breaking them just because I was handicapped " [sic]

It is also worth pointing out to people who are not au fait with the subject, that autism is not just about children who are incapable of interaction or who will become wholly dependant adults .....since re-classification, "autism spectrum" now covers everything from the fully withdrawn with serious behavioural problems, to high functioning individuals (previously Aspergers) who may only appear to be 'difficult socially'.

Its a minefield.

Gorki Wed 01-May-13 12:51:12

Well done youinthefields for taking that stance with your daughter. It obviously worked well. It's gut feeling and common sense that we are motivated by isn't it ? and of course each child is different My grandson is so advantaged by having a twin (though she may not think so !) and certainly when they are with us they both get treated the same even though it may result in him having a few more "wobblies".He was a late talker as well and had the classic symptoms of not pointing and not waving etc. but he caught up with these and hopefully the social skills will become a little more refined in time ! We have to hope and never give up, I believe.

Butty Wed 01-May-13 13:03:30

The question of labelling is a tricky one. It is necessary to be 'labelled' in order to gain the support a child needs in education, i.e. being statemented, but in many other areas of a child's life the label need not exist.

My grandson has attended a special pre-kindergarten for 2 years, but needed to be evaluated again at 5 years by a child psychologist for entry into a special dual kindergarten. He is labelled Austistic - and now attends this dual educational facility which attends to his 'special needs' in the morning, but in the afternoon joins a mainstream class, with a one-to-one teaching assistant. All this would have been impossible without the label. It is completely funded by the state. He has made terrific progress . (He lives in the USA).

As one friend said, it will just take him a little longer to reach 'normal', whatever normal is.

glassortwo Wed 01-May-13 13:12:44

Is it just me that finds 'statemented' a terrible label in itself when people hear that and dont underatnd what it means. My nephew is now almost 20 and without assessments he would have missed out on the help he received until he was 18, he and my sister are now finding life very difficult now that he does not have any groups available to him.

inthefields Wed 01-May-13 13:22:10

I think educational needs are a particular and sometimes badly needed "label", but as soon as that label is in place there is an application of behaviour toleration parents and by teachers.

Perhaps what is really needed is more training for those involved with "labelled" children, so that they learn not to make across the board adjustments and do not tolerate behaviours which would be unacceptable in un-labelled children. Certainly, when it comes to Aspergers, the more rules that are firmly in place ...and understood .....the happier the child :-)

I think I am saying that we all need to lose the instinctive over-protective reaction to autistic (& other 'labelled') children, and start treating them as normal kids who may need extra boundaries, not less.

Butty Wed 01-May-13 13:27:30

I agree glass. It's a harsh sounding label. It always reminds me of a child's forehead being stamped. In the States it's called being 'Learning Disabled'.

Gorki Wed 01-May-13 13:41:07

Labels are strange and always being changed. I find it strange that foster children are now called looked after children (as if others are not )and whereas I used to be an oral examiner, I am now a speaking examiner (as if others don't speak ).Sorry to have deviated from a serious topic .I just don't want my grandson to be called the autistic kid in the class.

Elegran Wed 01-May-13 14:09:31

It is the fate of all labels about personality/learning ability that they go out of date - usually by being applied inaccurately and a new one needed to describe the condition anew. A lot of traditional insults - moron, imbecile, cretin and so on - started off as scientific technical terms for specific kinds of mental disabilities.

The one I like the history of is "silly". In the middle ages, salig meant holy, or blessed. The less intellectual were thought to be under God's special protection (they were not much good at looking after themselves) and were "salig" . The word then went into more general use to insult anyone who was acting in a stupid way, and morphed into "silly"

(There is a line in Wordsworth's poem "Lines written a few miles above Tintern Abbey", a lot of which is about how the clergy were skimping on their duties, which goes "The silly sheep look on, and are not fed". The silly sheep are the holy church flock, not a lot of particularly dim ewes.)

Gorki Wed 01-May-13 14:20:37

I like it Elegran

Lyndajgran Wed 01-May-13 19:31:21

thank you for your advise, i think if i learn how to respond and react to him then its a start. nothing has been mentioned at school as far as im aware but he is brilliant in class with his reading and reciting.

Lyndajgran Wed 01-May-13 19:40:59

Gorki, the symptoms i've noticed are his amazing ability to learn and recite parrott fashion, his insistance on routine. he doesnt have the imaginative play that my other grandkids have, and only sees everything litterally and unfortunately his lack of social conversation. he will answer my questions perfectly but with the others of similar age we can talk about any number of topics but not with him. these are just a few examples. I just want to see him get the best opportunities and no my son and d in law are not bad to him, they just dont know how to react and tend to shout a lot

nanaej Wed 01-May-13 20:41:45

Lyndajgran it is not a label he needs but understanding of his particular needs. If he is on the ASD spectrum , and some of the behaviour you describe could fit that, then those around him need to understand what he sees/feels and what he is finding difficult to do compared to his siblings/cousins.

The argument about labeling children is complex. It should lead to understanding of why /how/ a child feels /behaves and offer strategies and advice to parents and professionals to support the child's progress and development.

However some parents want a label to excuse behaviour, some use the label to protect a child and others think it means /leads to under achievement and do not want a label.
In school an assessment that might lead to a statement of educational needs can provide additional funds so the school can have additional resources to help meet the needs of the child. I understand this is under review at the moment with a view that money might go to parents.

Gorki Thu 02-May-13 08:11:45

Lyndajgran It looks as if your grandson is high functioning and as he grows older he may well be able to develop strategies to cope with his problem. At this stage I would be guided by what the school thinks. It sounds as if he is not a problem for them.My grandson has been helped to play imaginatively and this is where you could help out possibly with pretend tea parties etc. I think this is very important at this age for social integration. At one point my daughter thought my grandson was being bullied at school but it turned out they were playing police and criminals but when they said a policeman was coming to put him in gaol he took it literally and was very frightened. It is now his favourite game !!

ninathenana Thu 02-May-13 11:32:06

Lyndajgran you have just described my grandson. With the added lack of eye contact. Also he is obsessed by cars/trucks he will spend hours lining his toys up. They have to be exactly level.
DD has always maintained he has a problem. He will be 4 this month and is due to go for an assessment next week. He is high functioning has an amazing memory, knows all his letters, shapes, colours and counts to 20.
DD wants a diagnosis. At one point she wasn't expecting him to go to mainstream school. He is due to start September. I think it's the best thing for him.

Gorki Thu 02-May-13 11:55:27

These high functioning children can achieve such a lot. Have you read the books by Temple Grandin.? She is amazing and gives lots of advice . She is autistic and has a real affinity with cattle. It sounds funny but she has done some really good work in that area and will leave her mark in history . My daughter heard her lecture when she came to Reading and was really impressed. Einstein is thought to have been autistic as well ,and there are many others who have done good because of their single-minded focus and their devotion to their pet interest rather than spending time socially.

My grandson had an obsession with spinning things when he was smaller. He would stand at the washing machine for ages and turn his pushchair upside down to play with the wheels. We had to take him to the Garden Centre to see the fans!!

I have a lot of time for these children. They are rarely malicious and generally don't lie. All they need is to be accepted and they can be heaps of fun .Who's to say they haven't got it right in some respects? They certainly do not conform to the crowd.

inthefields Thu 02-May-13 12:07:47

Lyndaj - your description of your grandson could be a thumbnail of my daughter at the same age. As mentioned, she remained un-diagnosed throughout school and did exceptionally well academically (tho bailed out at tertiary level as she could not handle the social aspects and changed structuring).
School bored her due to the repetition of points she had understood on the first run through, but she was not disruptive and forged ahead by reading the textbooks - usually at the back of the class. It sounds as though your DG is equally bright, and may be well liked by teachers

My daughter was bullied, but mainly because she has very red hair not because of social skills!!
Oddly, she found junior school much harder than secondary level where she discovered more children who were both bright and not popular, with whom she could form a circle of her own.

I would be very reassured, and as others have said, work with educating yourself. As a tip .... the best way to handle is with clear concise instructions given one at a time!! My daughter explains that her wiring is different (and research has indeed shown the brain firing differently) and therefore she cannot "read" facial expressions or intuit what is meant when sentences have more than one meaning..... she asks that people say exactly what they mean. An instance would be : could you do the washing up? to DD, this is not a request, she hears it as "are you able to do washing up", answers in the affirmative and carries on with whatever she is doing blithely unaware that anything was required of her. Distraction (sudden total engagement with something) totally over-rides any earlier directive, so "put away your toys" often resulted in compliance only up to the point that any one toy caught interest. There is no awareness whatsoever that this is not appropriate behaviour and they cannot process the emotional reasons/reactions of those who then become cross. Again, they are mystified by the responses.

It may or may not be of help to you, but if your DGS is anything like my DD then he will slowly learn to read his parents emotive responses simply because of the repetition over years. Not well, but enough to know how to stay within their boundaries. If an action consistent provokes shouting (and loud noise is usually abhorrent) then they do learn where the parental limit lies. It won't always help (we had some major confrontations -particularly in teen years) but it is those very normal responses that DD considers have enabled her to function as well as she does - as I said before.

I think I am wittering on, so will stop, but am very happy to talk through any other experiences of raising a child with this level of ASD if you would like to PM..

Your DGS already has the best thing in the world going for him ....someone who is prepared to understand, and learn, albeit in the background :-)
B x

Nelliemoser Thu 02-May-13 18:09:24

Cathy Calm is not a word I would use about almost any child with Autism. The difficulties in processing information frequently leads to those affected being very stressed by noises, new places and changes in routine etc that most other people would not bat an eyelid at.
This distress can lead to a child being presenting with very challenging behaviour, being overactive, distressed, destructive and self harming.
I am not generalising here but it can be a condition that seriously affects lives. I have known a number of parents of severly affected Autisic children who are constantly exhausted by caring

Yes! A very very few do have special skills the "autistic savant" but so do a great number of non autistic spectrum people. In reality, life for the individual and the carers can be very challenging indeed and it is people caring for relatives with this disability often need a lot of support.

I find it really hard to argue that there are any good points to this condition. There are ways of managing it and many of those at the "high end" of the autistic spectrum with Aspergers syndrome do get by. For others it makes life very hard indeed and independent living is impossible. That group and any carers do need to be able to make it clear that they need and deserve support .

inthefields Thu 02-May-13 18:16:57

Well said on several points Cathy, including the support needed by carers....but my DD would take serious issue with anyone who thinks that she just "gets by" with her life (and she was assessed as being lower on the spectrum than any of us expected!!).

Mamie Thu 02-May-13 18:38:09

Quite right Nelliemoser; calm is not a word I would use in connection with ASD. My grandson has high end ASD and my son says that it is very common for parents in his support group to think that their child is inevitably going to be some kind of genius.
I think this can get in the way of coming to terms with the acceptance of the realities of the condition and the many difficulties of bringing up an autistic child. Of course it is important to take a positive view, but parents need realistic support and help too.