A diagnosis at last!

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This is very long, but there are questions at the bottom, if you prefer to skip our storied history with the diagnostic medical community and get to the good stuff.

When my oldest son was six months old I, at the for me rather inept age of twenty-one, was concerned about the very odd pattern of his development. He had what really seems to be a very unique spin on it, as I've never talked to anyone else whose child followed this pattern. He would skate along at the same level for long periods then suddenly jump up in skill levels. Where most babies development looks like a slope, his looked like a staircase. I was assured by his pediatrician that all was well, and in my naivete, I believed what authority figures like pediatricians had to say.

When he was one and not pointing at objects, babbling, only saying two distinct syllables, and especially refusing to be held or cuddled at times that young toddlers normally like to be cuddled, I was very concerned and the word autism first flitted through my mind. The pediatrician said, "Look he smiles at people and doesn't scream when I pick him up. He'll out grow these things. Wait and see"

I waited, and got distracted by little things like having a second son just fifteen months younger than the first, and getting a divorce. This second son's development was picture perfect. If the baby books said at x age the child does y things, then that's exactly what was going on with him. Little things like the fact that both boys began babbling at the same time--not the same age--literally the same time, one was three months old, the other was 18 months old, and the younger one slept through the night months before we finally got the oldest to sleep at least until 5 AM, and a hundred others brought it back to mind that something was different about my oldest child, but I was still swimming in the pool of "wait and see" and "he's developing fine" and "there's no need for referrals for evaluations"

When he was two and a half and so clearly talking and so clearly hurting from the fact that we could not understand more than five of his words, I finally found my way around the pediatrician to the Department of Developmental Disabilities Services, and the wonderful lady then in charge of my county who arranged for testing. I was worried about his language, not then knowing the difference in speech and language. He actually tested within normal limits for expressive language, above average for receptive, and as having a profound phonological disorder. He was talking, it was just more his own language than English. This was my first introduction to Occupational Therapy as well. His fine motor skills were on the six to nine month old level. He had severe sensory integration disorder, and low muscle tone in his trunk and arms. He barely missed qualifying for PT.

I took all this to his pediatrician a few days before his well child appointment. She walked in, spent less than five minutes in the room, held his hands and asked him to jump (jumping and getting both feet off the floor by himself was, at the time the ONLY skill he possessed that was on target developmentally), and pronounced that he was developing fine and was age appropriate. I was too stunned to speak before she left the room, but we never saw her again.

This is really where I mourned. I was hearing things from the therapists involved with him like, "He's probably going to have to be in self contained special ed when he starts Kindergarten." The world that had seemed so full of potential when he was born was suddenly so reduced. And I cried some and then I got to work. And so did my son. He always in a good mood for his therapists and he always worked hard for them, and he progressed. A LOT. I still suspected something on the autism spectrum. I saw social deficits and other telltale signs. Other people only ever saw a cooperative child. I pushed through a referral to a developmental pediatrician.

We had the appointment. It was a disaster that shaped our lives for the next nine years. During the appointment, the doctor (an older gentleman) and staff seemed like they were listening and were taking us seriously. After the years of three minute appointments and brush offs from the pediatrician, I felt like I was finally going to get answers. Then I got the written report. The one where the doctor mocked me for bringing up concerns and especially for the fact that I had mentioned reading about genetic disorders that caused delays. Almost nothing that he said in the meeting was in the written report, only large doses of scorn. Living in a rural state, there were literally two developmental pediatricians I could go to, and they were both affiliated with the same clinic system.

So began our journey through the world of having no diagnosis, but still having to deal with high functioning autism. Interested in equine therapy? Too bad. Only kids with actual problems can receive that. Want to join in a parent forum? Why are you wasting our time with your Internet inspired self-diagnosis? Try to join a local support group? What could you need support for? My kid has Asperger Syndrome, how could you possibly relate to that? Your kid doesn't have anything worth diagnosing. Always standing on the sidelines watching while other people's kids were given privileges and opportunities that would be beneficial to my kid while being looked down upon for wanting those things for my child who must be "normal" since he had no "real" diagnosis. Without a diagnosis, when he turned five he could no longer participate in the Developmental Disabilities services, I had to fight to keep him in OT, and was unable to keep him in speech or PT. He had progressed to the point that he was able to start school with only pull-outs for therapy.

We heard a lot of words like lazy, not focused, doesn't try, argumentative, stand off-ish, not working up to potential, too smart to be behaving so immaturely. We moved to homeschool in the middle of second grade before the bullying got any worse. I was tormented in school to the point of fantasizing about whether it would hurt worse to shoot myself or cut my wrists, I can still work into a panic thinking about some of the traumatic incidents from my time in public school, and I had no intention of putting him through that. By that time I had remarried and was able to stop working to stay at home with the two older boys and later their baby brother was added in. We sort of floated along until he was eleven. Without the school's involvement, we were free to address his needs in his schooling and didn't require a diagnosis to know our kid and his needs. I decided I must have been wrong. Maybe his thing was something more mild like Nonverbal Learning Disability, or he really was just odd. I mean, it's normal for nine year olds to obsess about fantasy creatures, right?

Up until he got to the point where all those lovely executive functions should be kicking in and it's just painfully obvious how fast his age-peers are leaving him behind in that and various other skills like pragmatics and common sense. So in the summer in 2011, I finally worked up the courage to mention to another health care worker that I suspect he has AS and I want an eval. I need a referral. It took 15 months and involving the DDS people again to get appointment, because you can't just call this clinic up and ask for an appointment. Someone actually has to send to the referral. We finally had a diagnostic interview in August. I was fairly terrified, and refused to float any ideas for possible diagnosis when the interviewer asked, for fear that it was a trap to get me to say something they could mock. BUT she then brought up the autism spectrum, and I was relieved, but not as relieved as when I received the written report and it matched her office statements.

We then had to wait until January for the actual appointment. There is now one place in the entire state that make an official diagnosis of autism spectrum. I was again rather nervous, but everyone was amazing and professional. I think it sort of freaked them out that I wasn't freaking out when they so very carefully broke the news that the diagnosis was High Functioning Autism. I admit, I was a little surprised it was HFA and not AS, but I suspect it was the odd developmental patterns when he was small. Even though his language was never tested as delayed he did have severe issues in communication due to the phonological disorder.

So here we are, a bit over twelve years after I first worried about his development. Almost twelve years after autism first crossed my mind we have a diagnosis.

I am really not sure how I feel about it. This is still my kid with all his good and bad points that he had last week. I'm not of the camp that believes in eradicating autism or that is is a disease to be cured or that he is broken and needs to be fixed. After having spent years around parents who threw their children's autism spectrum diagnoses around to get attention and to allow their child to run wild, and knowing that most people in this area equate anything autism related to extremely low functioning or bizarre behaviors, I don't know if I should tell anyone or when it is appropriate or who needs to know. My mourning over diagnosis was done when he was three, but I can't find any resources for people helping older, newly diagnosed kids. I have to assume that a lot of people dealing with a twelve year old being diagnosed isn't going to be shocked to hear that their child has certain issues that are of a lifelong nature.

I don't know the resources (and holy hannah at the lists of resources that are suddenly available! It's like walking into a supermarket after living shipwrecked on a deserted island!), but all the introductory resources seem to focus very heavily on the grieving process and dealing with small children. I am more concerned with who to call to get help in getting my kid his booster shots, because he is 180 pounds, 5'5" and flat refuses with that fragile tone that says 'I am going to completely meltdown if you push this, I really, really can't handle it', and I know he is too big to be manhandled safely.

Another thing is apparent dearth of resources on dealing with siblings. My middle child is fifteen months younger than the oldest, and he is much, much more aware that the oldest has differences than the oldest is aware of himself. I let the oldest read one of the descriptor sheets they sent us home with to answer his questions, and he got to the part about "frequently develops obsessive interest in a topic" and flat denied that that could ever describe him. You know, the kid who practically breathes Marvel comics and has for the last 18 months? (fantasy creatures have taken a backseat after five years). Anyway, the middle child is being affected by this and is aware of it, but I am not sure where to look for help with him.

And then there is a growing anger that all these amazing resources have been out there all these years, and all these support communities (mostly speaking of local in person resources here) have been here, and we have been, in a sense, cheated. I don't know if that makes any sense. I am now way past my bedtime. But does anyone perhaps know of resources more geared at newly diagnosed after long battle for a diagnosis?

I so feel for you, and identify with your situation.

I have two daughters aged 7 and 11. I knew from virtually the beginning that there was something difficult with my eldest daughter. She was a really difficult and hypersensitive baby. As time went on she developed phobias and showed sensory problems, and anger. Her behaviour got really bad with meltdowns and oppositional behaviour which nearly drove me to a nervous breakdown when she was six.

My second child had come along when my eldest was three and a half, and she initially seemed quieter and different from my eldest, although she was also clingy. She was saying Mamma at 6 months old and other age-appropriate sounds, and then suddenly regressed to silence, then only making an mmm noise when you spoke to her. She started talking again after the age of two and then seemed to speak fluently in a relatively short space of time. She also developed weird phobias and used to carry objects around.

When my eldest was six, I started Googling for possible reasons for her awful behaviour and came across information about Asperger's syndrome. I knew immediately that this was what she had. I also realised I had it too.

When my eldest was eight, I asked the educational psychologist at her school to assess her for Asperger's. I didn't know what an assessment consisted of and I thought he would be able to carry one out. He got the SENCO to observe her in a couple of lessons and then I met with him, with my daughter present. He asked her to draw a picture. She drew a princess. The meeting lasted about 10 minutes I think. I didn't know what to ask, what to tell other than describe her meltdowns. As she was really well behaved at school (although has a history of socialising problems throughout school) they didn't see any problem. I had no idea then of the fact that many autistic children behave differently at school to home. I trusted him, when he said that they did not observe any signs of Asperger's in her because he was the expert as far as I was concerned, and at that time I was not at all well read on Asperger's.

As my youngest daughter got older, her behaviour became more and more difficult. When it was time for her to start school, I knew instinctively she wasn't ready, she couldn't even reach adequately to wipe herself after the toilet and I was still having to do it for her. A while after she started school her teacher told me she didn't interact with the other children, she just played alongside them. My daughter told me herself, that she didn't have any friends and that she used to play with her imaginary friends at break-times. She hated school and used to cry every night at the thought of going the next day.

I began home educating both girls over two years ago. They both seemed a lot more relaxed and less stressed, my eldest had hand tics which seemed to disappear. My youngest's behaviour got steadily worse, more and more meltdowns, awful sensory issues and dislike of crowds etc. I got more and more run down and health-wise from having the children 24/7 with their issues, and socialising them was very hard with my youngest not being able to cope with it. I referred them both for assessment. My youngest daughter was diagnosed with HFA this week. Finally. It took me threatening them that I'd give her some of my anti-anxiety medication to get a more urgent appointment. She should have been picked up in school for referral, there were really obvious signs and even after 8 months of school she hadn't made friends. Her teacher should have seen the signs, so she lost vital time to get help.

My husband has always denied they have any problems, blamed my parenting and that they are home-educated.

My eldest daughter has now got really bad OCD and I am having to push CAMHS to hurry up with her assessment. Because I trusted the Educational Psychologist who said he saw no signs of Asperger's when she was eight, she has now got to eleven and although she clearly has Asperger's, she is denying any problem, because she's at that age of not wanting to be different.

So she has got to the age of 11.5 without the help she could have and should have had, which is even worse than her sister. Although, her sister is slightly more severely on the spectrum because she has balance issues, proprioception issues, worse sensory issues and worse verbal comprehension. I am really angry that no-one listened to me. I had to really fight to get this far, and it has left me ill.

As with your situation, all of a sudden the letters of support come in a flurry for my youngest child. I applied for DLA prior to diagnosis and we were refused. Now, I am likely to get it, now we have more chance to get a statement of SENs, now we can go to the support group. I was so ill I was crying down the phone to them begging them to help us before, and they said they had to follow their protocol as regards length of time to be seen for assessment. It got so bad we had the neighbours report the screaming my daughter was doing to social services.

Now everyone is smiling and being kind, up until the diagnosis we were treated like an annoyance and that I was at fault for not coping.

I know my eldest will be diagnosed as well. It's just been such a long road and such a fight to get this far.

So I totally understand what you've been through.

Glad to hear you have had the dx! We are hoping for one soon with our dd5

To me, you are in the right place. Take a look at our reading list, take a look at our thread index, post your questions and let us brainstorm together.

As far as I can tell, the protocol on how to handle all those details that concern you is still being field tested and developed by, well, US. You, me, all parents. What you've done for over a decade all on your own: trusted your instincts, adapted, adjusted, tried things out, and stuck to what works for your unique child and family.

The main service you are likely to be missing right now is speech, the service through which my son is being taught to read non-verbal social cues. That could probably be arranged privately.

I wouldn't sweat the missed services too much; the biggest one for us has been the speech therapy, which involved pragmatic speech in elementary, symbolic speech in middle school, and now non-verbal speech in high school. With various graduations and requalifications in the middle. My son basically gets the same services as the NVLD kids. This can be caught up.

OT it seems like you are getting, so no miss there. With the exception of the typing (my son has a disgraphia/hypermobility/hypotonia disability), I've never been that confident about what my son got out of it, however; a shame, because that was the service we got the IEP for. But they did do a great job with the typing (6th grade).

He did join a group for a while for dealing with anger managment and stress issues, but while our referral came from the IEP team at school, he got in mostly because we'd lucked out that a local clinic had met several kids with similar needs around the same time, and thought it was something they wanted to do.

But the best thing I ever did was learn to toss out standard parenting advice, tune out what others thought, and learn to really pay attention to my unique child. Well, sounds like you've got that one covered. Some parents never do; they get too caught up in seeking professional help and in clinging to preconceived ideas.

In middle school I had to work hard with my son at home on those executive function skills. He just wasn't developmentally there, and school was running ahead of him. So, I took on the job of being his personal secretary. Every night. Until he grew into it. Another issue you've already found your own way through.

What really ticks me off is that you never felt accepted by other parents, as if the experts and their lables are the definitive line that needs to be crossed. We've never held that philosophy on this forum. Anyone who identifies with our experiences or who feels our protocols are useful for their child, is encouraged to post. Just be aware that our ASD members can be a bit blunt with opinions, and it can take some getting used to. Don't take it personally when anyone here reads a situation wrong; only you know the facts, and we can handle the reminder.

So, while reading your post, my mind was running between wanting to shout at the inadequate professionals and groups you've had to deal with, and being so happy with the solutions you've found on your own, and your ability to be what sounds like an amazing parent.

I hope you'll stick around.

I got pretty long-winded there. I was so wound up after finally getting that confirmation. Thank you all for replying. I hope you get assistance soon, Whirlingmind.

They are referring him for speech now with the same people who are doing his OT. He is on state funded insurance , and the last speech eval he had with them, they noted the social delays and pragmatic delays and prosody issues, but without an ASD diagnosis, the insurance wouldn't cover it, if he didn't also have an articulation or language delay, which he didn't. So hopefully now that clinic will see him. We like them and the next closest place that could cover it is 50 miles. Oh the joys of living in a rural area!

OT they aren't working much on fine motor skills right now. He can write neat enough to make himself basically understood in print and sign his name in cursive, and that's good enough for me in this electronic age. They are mostly working on things like getting him to complete tasks in a time limit, looking up phone numbers in the book, strategies to help him organize himself. We're coming up on our meeting for updating OT goals, and we are going to ask them to teach him how to shuffle cards and hold/organize cards in his hands, because we play a lot of cards with extended family and he feels bad about not being able to keep up. I don't know if that is really typical of OT at his age, but it is really good for us.

Has anyone else had a kid that refused to cooperate with medical stuff, especially needles?