Aspergers/ASD support thread

Nicki

It is worrying, and I understand exactly why you are upset, but try not to panic. As lil-me says autism is not that scary all the time, though it sounds that way to the uninitiated. I think you should have a word with the key worker and with the HV and have him assessed just to put your mind at rest. It is possible for children that age to choose to ignore others, but that's not really your only point of concern.

The thing to remember, and it is really easy to lose sight of at this point, is that whatever the outcome of the assessment, nothing has really changed in your life for the worse. He will still be your little boy, whom you love to bits. All that is good about him will stay unchanged. The only difference the assessment will make is that it will (hopefully) give you access to services such as Speech and Language Therapy which will help him to reach his full potential in life. You will also learn some different parenting skills, as being the parent of an autistic child is quite different from parenting any other kind of child.

When the diagnosis comes, if it does, doctors and HVs can be quite negative about prognosis, but the truth is that no one can predict how your child will develop in the future, and it is quite common for children on the autistic spectrum to have some significant developmental delays in early life. If you look on the forum I've directed you to, however, you will find lots of positive examples of adults on the spectrum who are married and holding down good jobs.

My DD is 5 nearly 6 now. She is funny, charming, beautiful and affectionate, and those are the first things I notice about her. She makes me glad every day that she is in my life. She is also non-verbal, which can make her frustrated from time to time, not fully toilet trained and has serious sensitivities to sound, which can make her switch off. That is what strangers notice about her first, but it is not who she is, and not who she will stay, as I can see every day that she is making very small progress in all of these areas. I take pride in achievements she makes, such as being able to come and ask me for what she wants, which other people take for granted with a child of this age, but the up side of this is that I can celebrate what are big achievements for her more often than the average parent does. She doesn't have a special talent, such as ts-aly describes, in fact very few people on the spectrum do (this is a very common myth about the condition) but she is a very special little girl in lots of different ways.

I hope everything works out for you. If your son is on the spectrum, you have done the best thing you can for him by spotting this early and seeking help, and if he isn't, as other posters have highlighted, he may still benefit from some Speech and Language Therapy, so it is well worth pressing forward with this.

D&DD

:T :T :T
Nicki I'm now sitting here snuffling into a tissue what a lovely post...
I think so many people see the negatives in our children as you mentioned sometimes even we need to be reminded just how special they are :T :T Thankyou

lil_me

Very good post there Nicki, like you have said, diagnosis should be used to access services, then forget it in all honesty, they are still your baby regardless. Also Nicki never give up with the non verbal, my friends son is 15 and I heard him talk, well say 'yeah' in response to a question for the first time recently, I could have sat and cried my eyes out, was such a moving moment, such a triumph for him.

I agree aswell, never pressume they all have a special talent, or it's the same, my sons is now reading and sealife, and of course his amazing memory of what he has read and knows about, at 6 he was sat reading encyclopaedias but at 5 he couldn't read or speak properly. A little hope, encouragement and a whole heap of love and it's a wonder what they can achieve. Just before he was 7 I got him to climb up a climbing frame, something I never thought I would see him do :T but I did cry my eyes out when he did it.

Dummie_2

So I was at the doctors for a completely non-related thing. At the spur of the moment I thought I'll pop into the HV's office to see if she was there. She was just walking through the door.

I just broke down and everything came pouring out. She told me not to label my DS like that and I should erase the word autism from my brain. She told me that usually autism is not detectable until 4-5yrs. She also told me that I tend to over react to things and think too much (I suffered from depression since I was pregnant). She will come over in 2wks time to observe him. I'm sure she'll say nothings wrong. Like they told me nothing was wrong when he was covered from head to toe in eczema when he was 6wks old. They told me it will go away and get better by itself. They wouldn't listen when I told them I thought he was reacting to his formula. I had to fight to be listened to. In the end, a stand-in HV listened to me, did some research and got the doctor to prescribe an hypoallergic milk for him. It worked wonders. I hate being made to feel that I'm over reacting. That everything is in my head. It makes me doubt myself. Why do they make it so difficult?

Ok. I'm just venting and blabbling now.

Thanks for listening.

dips_3

Dummie wrote:

So I was at the doctors for a completely non-related thing. At the spur of the moment I thought I'll pop into the HV's office to see if she was there. She was just walking through the door.

I just broke down and everything came pouring out. She told me not to label my DS like that and I should erase the word autism from my brain. She told me that usually autism is not detectable until 4-5yrs. She also told me that I tend to over react to things and think too much (I suffered from depression since I was pregnant). She will come over in 2wks time to observe him. I'm sure she'll say nothings wrong. Like they told me nothing was wrong when he was covered from head to toe in eczema when he was 6wks old. They told me it will go away and get better by itself. They wouldn't listen when I told them I thought he was reacting to his formula. I had to fight to be listened to. In the end, a stand-in HV listened to me, did some research and got the doctor to prescribe an hypoallergic milk for him. It worked wonders. I hate being made to feel that I'm over reacting. That everything is in my head. It makes me doubt myself. Why do they make it so difficult?

Ok. I'm just venting and blabbling now.

Thanks for listening.

This really gets me angry.

1) Unless your HV has carried out a proper assessment of your son she has got absolutely no right what so ever to tell you you are over reacting. over react as much as you like. This is your child and you are concerned. If she is prepared to dismiss your concerns and throw accusations at you then tell her firmly but politely what she is doing and request she takes your concerns seriously. If that gets no response go to your G.P

2) Autism is not a label - it is a diagnosis which helps parents/carers and the individual come to terms with their needs, access services and plan for the future.

I get fed up with this response from so called professionals Let's just repeat what the HV said but with a different 'label' ....."erase the word 'female/asian/dyslexic/deaf/blind/gay from your mind". Would that be acceptable or tolerated in our society? NO - so why should autism be any different? It is nothing to be ashamed of .

3) Absolute rubbish that autism can not be picked up until 4- 5 yrs. If a child of this age was not talking or socialising they would have been picked up long before that. A doctor may not wish to diagnose fully before this age but 'signs' can certainly be identified and a child showing these signs should be accessing speach therapy.

I hope things work our for you and your son. The signs you talk about could be a number of things including something as simple as mild transient hearing loss or just a 'late starter'. But my advice would be that if you are concerned do not allow your HV to dismiss these concerns.

Nicki

OK - So your HV has shown that she does not know very much about autism :mad:

It is true that it is more difficult to diagnose autism the younger the child is, but absolute rubbish that it is not usually detectable until age 4 or 5. In fact if you wait until then to seek help, you will have missed out on a valuable stage in your child's life, when intervention is likely to be most helpful. Check out the info on the web about the NAS's Early Bird programme which is only available for children under 5, and which is successful in helping children with these issues.

In your situation, I wouldn't wait for 2 weeks until HV comes round, because it doesn't sound like she has the expertise to help you in the first place. I would speak to the key worker when you pick your little one up after nursery today and ask her what if anything she has noticed. If she has any concerns at all, ask her to put them in writing. Even if she hasn't, I think you should get down in writing all the things that you are concerned with, and take this to your GP to discuss. If you write everything down, then you won't forget something important in the stress of the moment, and even if you do break down and get upset, hopefully the doctor can read what you've written and see past the tears.

If doctor is also disinclined to believe there is anything wrong, you should still keep things under review, and I would recommend that you then start to keep a diary and go back again in a few months if there is no improvement.

Whilst it is not necessarily a cause for concern, it is outside the normal range of child development for a child not to have much expressive or receptive language by 23 months, and certainly in my local Health Authority this would justify a referral to a Speech and Language Therapist at this stage if nothing more. A SLT is not allowed to actually diagnose autism, but would almost certainly recognise it if they saw it, so would be a useful ally to have in the future if your child needs further assessment and a firm diagnosis.

Good luck. It is by no means uncommon for parents to find it difficult to get a referral, when they suspect their child is on the spectrum, and there is I'm afraid still a tendency for HVs and Teachers to assume at first that any probems the child has are as a result of bad parenting, or that concerns are a manifestation of parental over-anxiety. All the research shows however that autism is not caused by, or contributed to by, how good your parenting style is, or whether you have, or have not had, depression or an anxiety disorder. Don't let any mis-informed, or badly trained, person tell you otherwise!!!:mad: :mad: :mad:

SammyD_2

Please please don't take "no" for an answer if you find it hard to get referred. My son has very severe speech problems. At age two I was told "he is just slow to speak, read him more books". Two GP's fobbed me off, the nursery nurse (who assists the health visitor) who did his assessment told me he was normal. I knew he was not.

I actually found that the Health Visitor was able to get my son referred more quickly than the GP's, once I got to see her. But in the end I paid for a private assessment of his speech, and have paid for his speech therapy every week, but did get a paediatric assessment and hearing test on the NHS.

In my health authority, you can self refer to the speech therapists (although the GP's wrongly tell you that you cannot). I was also told he could not have a hearing test without seeing a paediatrican first (for which there was a four month wait). But I kept ringing the clinic and finally spoke to an audiologist who threw a complete fit at that advice and he got an appointment the next week.

I would second the comments about getting a referral to a speech therapist, as you will then have a professional who can start things off, and give you a steer on what to do next. But also push for a full paediatric assessment to be done.

I know how heartbreaking it is to feel like you can't access the services for you child. Hang in there.

devizes18193

I have 2 kids both on the spectrum 1 has aspbergers and 1 is badly autistic . In both cases we had referals to an peadertrican whom made the diagnoses .This invloved a long test wich comprised of being asked questions on the kids medical history . So personally i would see a gp not an health visitor ,as your gp is further up the nhs food chain ,as it where . The other thing is thereis a range of other problem that can give symptoms of autisim . This is what happend in the case of my kids ,its not as scary as it sound though ,as the symptoms being autistic in nature they get treated as autism.
This sort of thing is best caught as early as poss though .

dora37

I know nothing about autism, so can not help you there. Just wanted to say, that your gut instinct is something to listen to and if you think something is not quite right, then persevere.

My DS2 (12), had a few growth and physical development issues when younger, that most people, including medical people and family thought I was overacting to. I knew at 7.5 months old that he had a squint, but most people disagreed, but I know I could see it and went private to a eye consultant, he confirmed it immediately and DS was wearing glasses by 9 months (and still does).

I was concerned about him not talking and walking properly, however knew it was a physical problem, not a mental one (again mothers intuition). I pushed for Speech Therapy and he went for quite a long time, which worked wonders. A physiotherapist assesed him and diagnosed soft/floppy bones, this was causing flat feet and he went on to wear special insoles in his shoes for about 10 years (no longer needs to wear now).

But the most concerning meeting I had was with a paedatrician when he was 2, who said he wouldn't be able to go to a 'normal' school - but I knew there was nothing wrong with him mentally, just physically. I went private to another padatrician who never even kept on file, his measurement or weight despite being a growth concern. So I went back to the GP and asked for him to be referred to a specialist Growth consultant at Alder Hey Childrens Hospital, which he did and then everything they said about him being behind in his bone age made sense.....it WAS a physical issue. He still goes there and will do until he reaches puberty.

My point in all this, is that as a mum who is with their child most of the time, gut instinct does come into it and most of all if your are not happy with anything ANYBODY says, go for a second opinion and more if necessary - KEEP PERSEVERING.

P.S. DS2 has been accepted onto the NAGTY (National Association of Gifted & Talented Youth), run by Warwick University...not bad for somebody who was not going to make it into mainstream school;)

mickeymumx

my son was diagnosed with aspergers syndrome ( autistic spectrum ) at 3 ys old, a very experiencd nursery teacher said she was sending him to be assessed and lo and behold ...ignore any health proffesional and follow your gut instinct until he is properly assessed by a psychologist, my son does not follow to the letter the symptoms of AS and he has learnt very well how to behave " normally " but that doesnt mean he is "" normal "" , i wouldnt change him at all , he is a super kid, goes to normal school, has mates, hobbies, he just is a little different, good luck you ar a great mum, and you will cope better year by year, good luck xx