Who noticed your childs problems?

[dekra]

Hi everyone,

 

I just wondered for those of your with little ones how did you get to referal stage? Who picked up on issues, was it yourself, HV/dr/school? Were any of you put off by health professionals for a time and your concerns dismissed but later proved to be genuine? Those of you that had to fight for your concerns to be taken seriously how long did things take to finally move on and be taken seriously?

 

This is just for interest, my son is waiting inital referal and other than his nursery(who recognised Finn had additional needs from the offset and asked permission to get the educational psychologist involved), no-one else has really listened to our concerns but when the referal was finally agreed (and done correctly eventually) it was reviewed by the diagnostic/assessment unit and an inital consultation agreed so obviously they haven't dismissed it out of hand. Part of me is cross I am now at this stage after over 2 years of raising concerns, mainly with the HV.

 

I might turn out to be an over-anxious mother but more likely we will get a dx of something whether it is ASD or something else. But having read the draft NICE guidelines for referal processes that someone kindly linked for me the other day they seem to emphasis a parents concerns should NOT be dismissed.

[Sammysnake]

Sorry this has ended up so long...

 

I'd noticed differences right from a baby really, mostly in motor skills. When she started preschool she would get very loudly upset by things that didn't bother the other children and was forever tripping over herself and spilling drinks etc. She walked stragely too. I knew there was something different so when the preschool SENCo raised concerns I wasn't surprised. Initially she thought Dyspraxia so that was the line followed. GP referred to a physio becaused they focused in on the unusual way she walked (feet turned in) but after two visits she was discharged saying she had slight hypermobility but it would get better. I told the physio there was more going on and I was concerned about her extreme outbursts at preschool so she said to ask the GP to refer to a paediatrician. We got an appointment just before Beth started school. Preschool sent in a brilliant report highlighting every single 'idiosyncracy' and strategies they were using to support Beth but I think because Dyspraxia had been mentioned, that was all the Paed was looking for. He met her for five minutes, asked her to walk a line and close her eyes and do some little tests then told me there was some mild DCD, she would grow out of it and it was a pleasure to meet such a happy and well adjusted little girl. I was so sure the Paediatrician was the expert so I didn't explain that Beth was happy and settled in a 1:1 situation which I had prepared her in advance for and that her issues were only aparent when she was with other children or in emotional situations. My husband said I told you so when I got home and from then on no one believed me there were any issues other than me being overprotective. I read up on Dyspraxia and started implementing my own strategies to support Beth. She started school and my concerns continued but no one else shared them so I tried to tell myself I was wrong and really was just overanxious.

 

A little while later I met an older lad with Autism and began to notice just little flashes of similarities in unusual thinking patterns that they shared. His mum has worked for years in special needs and it turned out some of my strategies for supporting Beth were the same as the ones she had been taught to do. We talked a lot and over the years I saw more and more of this lad in Beth. Each school year I would talk to the new class teacher about my concerns and they would all assure me everything was alright despite the fact my highly intelligent daughter couldn't write properly or get anything much from her head onto paper and that she was constantly overwrought and exhausted. I work in Beth's school and would hear her crying from a different part of the building!

 

In Year 3 a child with Asperger's came into Beth's class. They are very different individuals with very different needs but the common ground was glaringly obvious. School got a lot of outside support with him because of extrememe behaviours, Beth got nothing because her distress wasn't expressed physically. Finally, towards the end of Year 4 and after a steep learning curve with this other lad, a teacher finally said I think there's something wrong too. I cried with relief. She asked me what I thought it was, by now I was heavily learning towards Asperger's and she agreed. School asked for a referrel back to the original Paediatrician and this time I was armed. Before the meeting we sent off a full social and emotional checklist and I sent my own report ahead of the meeting detailing everything that had happened over the years, all the issues I had seen in different settings and how she responded differently to them and all the strategies I had been implementing. I also had a list of prompts with me - I was going to make sure I said everything I wanted to this time! Beth was now 9.

 

He talked to me and to Beth extensively, asked her questions about why she was looking at details around the room and being highly skilled with language she was able to explain exactly wht she was doing. He asked me what I thought it was so I said an ASD, not wanting to be too specific in front of Beth in case I was wrong. He agreed and then explained to Beth that she has Asperger's. I was surprised, I thought he would tell me privately and I would tell Beth but thankfully I had spoken to her before the meeting about why we were going. I told her it would be really helpful if there was a name for her personal mix of strengths and weaknesses as it meant there was also a collection of tried and tested support methods that other people had used. I didn't mention the names of any possible diagnoses though as I might still have been wrong. To me he said, "I'm really sorry that I missed it five years ago but thankfully Beth hasn't lost any time because you've been using all the right support strategies all along". It was a huge relief and I don't feel like I'm fighting anyone anymore. Beth is more relaxed because she understands and I now have full permission to read books on Asperger's in full view of my husband and anyone else instead of hiding it!

 

So, 6 years from initial GP visit to get our diagnosis but I'm so glad I never let go of that nagging doubt. To anyone going through this I would say, gather as much evidence as you can, write it all down and give it to people in plenty of time for them to read it before appointments, take notes with you and make sure you get to say everything you want to and ask all your questions and take someone with you to prompt you and help you remember what was said. Good luck to all.

[Lyndalou]

So many of the posts I read make me feel very fortunate that my little boy's problems have been spotted and identified when he is still so young. I noticed a number of things from around the age of 1 on when we were going to toddler groups and other activities. Initially, I thought that maybe he was a bit shy or apprehensive around other children because he didn't have contact with other children at home. He would always get upset when other children came near him on play apparatus and when we went to one particular toddler group he would start crying before we went in the door. I wondered if he was claustrophobic because the group took place in a low-ceilinged room and he also seemed to have this reaction in other enclosed spaces. We went to a gym class in a very large hall and he was quite confident there except for when again he had to 'share' apparatus. He never wanted to take part in the group activity at the end of each session. He had always been very determined, wanting to do his own thing and I suppose I thought that(like his parents) he was just quite stubborn. At another toddler group he would mostly walk around the edge of the room but not play alongside the other children.

 

As time went on, the main thing I became concerned about was his speech so I raised my concerns with the HV. In my area they have stopped routinely assessing children at 2 years old which they always used to so the HV said she would waive this for him. As a result of this meeting, very soon after his 2nd birthday he saw a Consultant Paediatritian who was attached to a local special needs assessment unit. By this time he could identify all the letters of the alphabet, was obsessed with numbers and was very good at puzzles. I was pretty happy about that! However, the Paediatrician seemed to view things differently and after a short observation said she had some concerns about his 'unusual communication'. She didn't explicitly say ASD but I was very upset and requested a longer follow-up appointment which she agreed to. On that occasion I went armed with a list of his abilities and my observations She reiterated her concerns and asked if I would agree to him being formally assessed. Still sure I just had a very bright and determined little boy on my hands we decided on a referral to speech therapy.

 

We attended speech therapy for a number of weeks and during that time his idiosyncrasies became more obvious, as did his behaviour around other children. I agreed for him to be formally assessed just prior to his 3rd birthday and after a week of assessment at the assessment unit, the diagnosis agreed upon was Mild, High-functioning ASD. There had been input from an Educational Psychologist and through her intervention he got a place at a special needs nursery in April. Thus far, we have been very impressed by how synchronised everything has been (with a little pushing and shoving via e-mail/phonecalls etc) and we feel very positive about the future. We can see so many changes and improvements already as well as more obvious ASD behaviours we are aware of and are more in a position to understand since we did the 5 week 'Cygnet' course which was again very well run locally. He has another appointment with the Paediatritian soon.

[dekra]

Thanks for sharing that Sammy.

[dekra]

Thank you too Lyndalou.

 

It's quite shocking the vast gulf in support you and Sammy have recieved.

[BusyLizzie100]

Hi Dekra,

 

I have three on the spectrum so their stories kind of overlap; I'll keep it as brief as possible!

 

DS2 was born 3 weeks early but feeding difficulties weren't picked up (despite my concerns) until he was 10 days old when the health visitor weighed him properly and found he'd lost a quarter of his birth weight. Back into hospital we went because of severe dehydration and we've been 'in the system' ever since. His development was regularly checked. He has hypotonia (low muscle tone) and physio began at age 10 months to try to get him rolling and using his body. We got him crawling at 17 months and walking at 2 years. All developmental milestones were just on the cusp of acceptable.

 

He was referred to OT and eventually SALT but was discharged after a few sessions. There was no real professional concern, although I was mystified by his presentation...

 

MEanhwile I had concerns about DS1, who's 2 years older. He was very full on, and although no delays, he was referred to OT with suspected dyspraxia because, as I told the GP, 'He falls over so much and is constantly black and blue from bruises!'. This OT was different to the one that saw DS2, and suggested I read The Out of Sync Child, which is about Sensory Integration. I saw immediately how DS1 fitted the picture, but even more so DS2. Sensory issues are enormous for both boys, although they present differently in each.

 

I went back to OT re DS2 and he began SI therapy. By that time I'd started reading more and more - DS2 had already been tested for Fragile X Syndrome and Muscular Dystrophy but they had been ruled out. I came across autism and again he fitted the picture. I clearly remember the moment I first posed the question to the paediatrician and OT: 'Is there any chance that we could possibly be talking autism??' In any case I though it could only be 'mild' (bear with me; I hate that expression now!). The paediatrician smiled and laughed kindly: 'Oh no, he has eye contact and is smiley and too socially orientated.'

 

I was at my wits'end! I had one totally full-on child and one totally passive child.

 

However the lovely paediatrician obviously did take my thoughts on board, spoke to the OT, the SALT and the nursery school, who all felt there was 'something' there, and she referred him to Guy's Hospital, largely with the OT concerns in mind. By then I was convinced that DS2 had Asperger's. At Guy's, Prof Gillian Baird and her amazing team 'got' him straightaway and diagnosed ASD, with possible additional learning difficulties (since ruled out); he was 4.

 

By this time we were learning fast! We went back to the same paediatrician re DS1, thinking he may have ADHD, and she proposed Asperger's. We weren't surprised. We were referred to a multi-disciplinary team who confirmed her dx at age 8.

 

I definitely feel that we as parents led the whole process, and were several times batted back with an airy wave; DS2 especially was consistently discharged by SALT and OT. Unfortunately for DS1 this attitude persisted right through his primary school education, since because he is extremely bright he is able to use his cognitive skills to cover up and mask a lot of his difficulties; however this has come at enormous cost and earlier this year he became suicidal.

 

The support since diagnosis has been pants.

 

Meanwhile DS3 came along, hit all developmental milestones super early and was physically a million times more able than the others. He appeared to have very obvious signs of ADHD, which the paediatrician confirmed at age 3. However by age 7 it was established that ASD was the prime diagnosis, although again because he is extremely bright and able its presentation can be very subtle - he is clearly very high functioning. At the moment, age 8, he is benefitting hugely from our experience (!) and his difficulties, or differences, are not causing too many problems.

 

Autism is very much the norm in our household

 

Lizzie x

[Lynden]

I first expressed my concerns to our HV when my son was 11 months and we were living in Glasgow. I was told that a) he was a second child he was a boy and c) I was comparing him to his elder sister who did everything in advance. I knew that was rubbish, but we were moving house so I waited.

 

When we moved I saw our new HV when he was 13 months and she agreed that there were issues so we were referred and seen by a paediatrician when he was 15 months and as I said in another post we had our full week assessment and official diagnosis when he was just over 2. If I am remembering correctly, it was the same assessment centre (and possibly paediatrician) that Lyndalou would have had her little one seen at also.

 

Lynne

[dekra]

Thanks for sharing your stories with me ladies.

[Sally44]

I had concerns from when he was a baby. We even spent a night in hospital due to him banging his head and vomitting. This was because I had taken a toy off him because it was time for bed. He got so distraught, deliberately banged his head and threw up. This was his regular behaviour to what I came to know as "transitions" and "change".

 

I raised this with the HV and was recommend a book called Toddler Taming. I came away thinking she just had not listened to me. I already had another child. I wasn't an idiot. I already knew that his response was not "typical" and no-one seemed to understand me when I said it was a total emotional over reaction to small every day or insignificant things. Sometimes I had no idea what had caused the reaction. And the reaction was severe and prolonged - sometimes 24 hours. It wasn't just a tantrum. He behaved like he was totally devastated, overwhelmed, unable to control or self calm, unable to deal with and move on from the situation. He would hit himself, bite himself, vomit, bang his head, poke his eyes, scratch his face and hands. It was awful to watch. And trying to talk to him or hold him just made him worse.

 

At nursery the teacher raised issues. He did not speak much. Could not socialise. Could not participate in carpet time, used to scream when people looked at him, repeated back what you said to him, used to spin all the time, used to trip up all the time, appeared deaf, covered his ears, used to spit alot etc.

 

I told the HV and she asked the nursery if she could observe him and the owner refused. The owner was a mutual acquaintance and she assured me he was "a typical boy". Which was what every parent wants to hear, so I left it.

 

My next door neighbours are both primary teachers and when he was 3+ they had a word with me and said he was not speaking enough and that he would have problems when he started school.

 

I went to the GP and repeated what the neighbours had said. I again said he was repeating back what I said. Did not appear to understand what I said to him, appeared deaf, was always spinning, covering his ears etc. He said "every child is different, and that if there are any real concerns they will be picked up when he starts school."

 

That was the BIGGEST MISTAKE. He began school totally unprepared, totally incapable of coping. He refused to walk to school and I had to take him in his baby buggy. He used to throw tantrums, vomit, head bang etc. School called me in for a meeting after 6 months and he was referred to SALT. She assessed his language and immediately referred him onto the childrens hospital, communication clinic (which is where they see clinical psychology and a developmental padeatrician).

 

It took 18 months for him to be diagnosed because he does not completely fit the criteria. He has never been properly supported in school.

 

I moved him to another primary school for the beginning of year 3. This school supposedly has "experience and expertise in children with ASD". It is still mainstream. They simply did not pick up on his difficulties - and kept saying they had no concerns.

 

The vomitting returned. He gradually deteriorated and began threatening self harm and suicide. On one occasion I found him on the window sill with the window open and when the CAHMS Psychiatrist asked him what he had intended to do he said "to jump and break my neck", and when asked "why" he said "so I don't have to go to that place again [school], it is like a car crash in my head but without the cars."

 

He hasn't been in school since January. We are waiting for an educational tribunal at Sendist. I am very disappointed that he has received no education at all during this time. But he has improved from the state he was in earlier this year.

 

I hope to get something finally sorted at the Appeal.

 

My son has a number of diagnoses and it has been an inch by inch battle every step of the way to get anyone to admit or assess or make recommendations on the level of support he needs.

 

I would advise anyone to go with their gut instinct. But that "instinct" has to be backed up with cold hard facts. It is so early to be fobbed off by anyone and everyone because we want our kids to be okay and we don't want to be told they have a lifelong diagnosis that will cause them significant difficulties in life. And it is hard to listen to a professional and then say "I'm sorry, but I still think my son needs to be properly assessed." We are bought up to believe in the advice we are given. It is hard to challenge that. But often parents are not dealing with the first born child, they can see the differences between their children, and how their child is with other children in other social situations.

Edited July 23, 2011 by Sally44

[dekra]

Thanks also Sally.

 

Reading all your stories really humbles me. My son has issues but the extremes of some of your childrens situation have deeply moved me. I am more convinced than ever I am doing the right thing insisting on assessment for my son. Best case scenario I am proven an over anxious mother, if not then I will have done the right thing and made sure I am doing all I can for him.

Edited July 26, 2011 by dekra

[Kathryn]

I noticed quite early on that my daughter seemed to be doing things differently to everyone else. The experiences of toddler groups Lyndalou describes are almost exactly like my own. However I went for years thinking there must be something wrong with my parenting and so if anyone mentioned concerns I would be defensive rather than relieved. No one ever mentioned ASD as a possibility - the concerns were more about not reaching physical milestones. Also the problems were never severe enough to warrant any further intervention: once my daughter started to read and write well above average and hold very sophisticated conversations with adults, no one thought there was anything very much wrong, so it seemed even more that it must be a home issue.

 

It's difficult to say, but I think early diagnosis may have prevented the severe effect school had on her mental health later on. Assuming of course that she had been given the appropriate support - which is never guaranteed.

 

K x

[Karen A]

Hi.

 

Ben went to an excellent nursery and we had very many knowledgable friends.One of my best friends had a son with ASD.

Everyone was of the opinion that Ben was a very bright lad with a bit of an attitude problem who had had a lot of adult input.For the first three years of Ben's life we lodged with a single friend.So Ben had three involved adults in his life.Hence the reason for his adult manner and interest in interacting with adults.It was thought he just prefered to interact with adults talking about his many inerests.

 

He had a very difficult year 2 at primary school.However my mum was very ill that year and subsequently died.As I was away from home in that time as well looking after mum we took our eye off the ball.

 

Ben had been in year 3 about two weeks when his teacher explained that he reminded her of her son who had AS.

I myself and my many knowledgable friends were rather shocked and puzzled.

It took a further three years before Ben was diagnosed with AS.

However most people now agree that he is a very bright lad with a bit of an attitude and the vocabulary greater than most adults who has AS.

Edited July 27, 2011 by Karen A

[Suze]

Looking back there were lots of things that should have raised suspicion however it was,nt until my son was 6/7 that things became very worrying, after a dx of dyslexia and dyspraxia the school referred him to camhs as his behaviour was worsening and he became depressed and refused school, he was subsequently statemented and dx with ASD ASWELL.

[sesley]

mine was me at 2,his language was scripted from tv shows,when he run toddlers over in a coszy cope,he used to look past me when i told him off. he was late toilet training,he would not settle in playgroup,just run around and not listen to anyone.In the end at his 3 year check,with health visitor,she saw me in tears as he literarly climed the walls, and refered me to a speech and langauge therapist.In the end he got ASD diagnosis at 4 after a year of seeing paeditrions and speech therapists. and he is doing juat great now

[LDF]

I noticed when DS was around 2, I spoke to HV several times and she kept him on seeing him every few months long past he was 3 but never really done anything, just kept saying maybe he will grow out of it, give it time etc. She retired and DS started school, I couldn't get the teacher to listen to me, but the headmaster witnessed an incident and called me to the school insisting Ds see a counsellor when he was 5. Since then it's been a bit of an uphill struggle with some teachers supporting me, others insisting there was nothing wrong, and some not even knowing what Asperger's was. DS eventually got a diagnosis 8 mths ago at age 8.

[bid]

Reception class teacher, then the school referred him to the school doctor who referred to a paediatric neurologist, who diagnosed Dyspraxia (rising 6). At the same time, also seen by the community paed. who then referred at 7 to a specialist diagnostic centre for childhood disability, where he was given the primary diagnosis of AS, with ADHD and Dyspraxia as co-morbids.

 

This was 15 odd years ago, before CDCs.

 

Bid

Edited August 5, 2011 by bid